Friday, October 31, 2008
I am also adjusting to the fact that I am supposed to die. But as I said to Linda, “How many treatments have failed?”
And she said, “None.”
And I said, “Exactly, so I will live, how can I die, with cancer they have lots of treatments, if you told me they had tried five treatments and failed I might be discouraged, but no, I am going to be fine. Once they try a treatment, things will be different.”
Then I had Seizures almost without end until past 3:15. And today. I have a dropsy face, and I have lost my balance or sense of up, which could be inner ear thing. Either way, here is to autumn and tonight.
Sadly, tonight means that I will be lucky to get a nap much less any sleep as fireworks will go off at a regular basis long into the night. This means likely some more trauma to me. But Linda said, “Don’t die on me today!” to me in an email. So no, I will be turning away all Death Madonna’s I see, however enchanting they may be.
Right now the best word for me is addled, or shaken AND stirred. I had to create a disassociate state to get some things done, to be strong when I was weak. And it cost me, very badly. I have been told about a lesbian dance in town which is accessible by Lisa (Thank you Lisa) but even my care workers who watched me though another three or so seizures say that I simply cannot be moved. I am sometimes too weak to breath, but luckily, I have very good people who help me breath when I am too weak. I am integrating, but also I am mixed up. I am a ditz! Sorry, I will not die today, so please go and have fun. I need to lie very still for a very long time.
I did so want to get dressed up and go trick or treating (pushed about in a wicker wheelchair!). Right now I really want to try and get to my bed which means three transfers (chair to wheelchair, wheelchair to toilet, back again and then to bed – wait that’s FOUR!). Have a great time tonight. Play safe. Fireworks are not actually to be used as weapons to aim at your siblings!
(Odd Gay Note: needed to speak to someone in a call center maybe in India, or the USA, not Canada, about something, I was 'Madam' after telling them I was Elizabeth. It turns out account not in my name but Linda's. I kept saying, "We're partners!", no go, "We are married!" nope. Who was she to me, they wanted to know. I would not say "My wife!" so I said, "I married her!" in almost a shout. I was "sir" for the rest of the call, no matter what. I am married to Linda, thus I am 'sir' - Call Center logic)
Wednesday, October 29, 2008
Linda says I am permanently sick but have no disability income, or other income. I have items to sell on line that she has promised to help me sell, but that I am too sick most days to do them myself and she has promised often to help me she says, like listing things on ebay. But she so far does not, she also says, too busy. So I have little income.
“And what do I do with what I have?” I asked, as I was scanning ebay, as I would be in Cardiff, looking for items to turn a quick profit.
“You buy things,” she said (this sounded familiar), “and you give them all away.”
“All of them?” I was slightly incredulous because if you don’t keep some floating base, how can you maintain your profit or core capital. Yes. Everything, I gave it all away.
I thought about that for a while. “So then, this MSA thing, it’s pretty serious?”
Yup. This is not to say I do not like to think of myself as generous, but you only give away everything when you don’t need enough money to keep maintaining yourself. When you honestly belief there is no point in keeping things to spread throughout your life, but rather that this short time is your life.
I did not ask her how short. But she said I was not anorexic anymore, no, I didn’t do that, I just was that thin. And pale?
For now I don’t know you, those reading, really, or that much. Indeed it seems all the people I know are a continent away. And it seems that who I am is further...
Who is this Elizabeth? Why would I not come up with some scheme and pour my energy into that, write another book, or create a job? I can’t explain it, nor can I explain this apartment and its medical equipment.
“Here,” Linda said, handing me an oxygen nosepiece.
“I am NOT on oxygen.”
“Yes Sweetie you are.” (Only Linda calls me Sweetie, try it and I will rip your lungs out!). She said lots of people are.
I asked her to name one my age. Except the one we knew, back in the UK. And she had cancer. A panic made my heart squeeze up, “I have cancer?”
I could see Linda choosing her words, she is not a proficient liar. Apparently I do NOT have cancer, but I have a serious thing, something as serious as cancer, plus something else, I could tell by the pauses, that there were other things she wanted to say, but didn’t. At one point she said I had been let down by so many in the medical field. It made me check my toes and maybe I should check a mirror, I can’t FIND any amputations, or surgical scars I don’t remember. What did they screw up so bad?
Linda and I are in a bit of a tiff over language. She keeps using “We” the way First Grade Teachers use “we.”
“Who is ‘WE!’” I demanded. Turns out “we” is me, or the me that is supposed to be receptive to the cues from her, or the like.
She even said, “That’s okay, we don’t have to eat our whole dinner.”
“We?" I exploded, "I was not aware that mastication and swallowing were a group activity!” I had experienced more than enough of 'we'. Experienced enough of this place to be honest.
I am a person who does things, solves thing: I open stores, I find jobs where none are, I make money to pay rent, I do not have little funds and have to clear them through ‘authority', my partner Linda; I am not a child, nor an old person. I am not a person who needs help brushing my teeth! Except it seems I am. Since she had to.
“How do I live with this!” I railed trying to type and hitting wrong keys 3 out of 4, asking her how the 'other Elizabeth' could stand it. Apparently she does.
Everything is changed, Linda as well. She is stronger emotionally, tougher, but more tired, sighs more. She handles confrontation better, even if with me. But there is a fatigue in her voice when she talks about not using the “we” and not trying to control everything I do. I ask if we have talked about this before. Yes. Linda is wearing too many hats. I think the fatigue is because she knows she doesn’t have the luxury of time to work at changing. Is she forced to do too much as my medical aide, the person who takes care of me, and there is nothing left of “us”?
“Why does my head hurt?” I ask her, holding the back of my head.
She says this is a subject that gets me agitated. She says it like there are a lot of subjects that do that and that agitation is when bad things happen, bad things happen to me. She said we were talking about this subject when I had my seizure. And now I am here. Only it seems that Tony Blair isn’t Prime Minister and I am not in the UK, and that the “I” who is talking to you will disappear in the morning, maybe.
Tomorrow I am supposed to be fitted for a wheelchair. She won’t say what type. I think she thinks I will get upset if I find out. She doesn't want me to answer my email or open it, because I will get upset at things in there, or confused. Quite honestly, I don’t mind not taking in any more information. Nor am do I find the idea of disappearing when I wake SO awful. Maybe I will wake back in Wales. I think not. But maybe the person here will be stronger than I? I seem to be a person bound? A person overcome with appointments and organizations and no wonder I can’t find a job. And if I don’t know who I am to be, how can I remember all I would need to maintain my own business.
Linda says that is another problem, that I can’t remember things.
I like these images of girls I found on here (this computer), though the ones with wings are all bound, bound with ribbons to keep them from flying away.
So, while I will be gone tomorrow, I guess the other Elizabeth, probably very battered one, if Linda is any guide, will be back. If Linda is that tired, that weary, that exhausted, then Elizabeth must be a bit of a wreck. I say that not just because of the way Linda watches me all the time, as if I am about to fall over, so physically I'm guessing not in good shape. Because Elizabeth, and I mean me, always was a bit of a slow learner, in that, just because I got smashed down by a brick wall doesn’t mean I would stop running (or rolling) at it again if I believed it shouldn’t be there. So how bad off is she (Elizabeth)? Bad off that the only things on her desk are an anime figure, in a wheelchair, an inch or two high and pain medication.
Is she so lost that she needs something to touch every day to remind her that she is not alone in history or society? Is she that alone in life? How does she go on? By looking over and remembering that she is not as alone as she feels? And by taking enough pain meds to focus?
There are two pictures on her (I mean 'my') bookcases, one is a girl with wings, and the other is this. I can’t tell if it is Elizabeth and Linda in the picture nor who is supposed to be watching over whom; who is the exhausted one? Or is it Elizabeth watching over herself. Am I the one standing, her past, her Cardiff memories and attitude brought up to give her a rest. Though the picture has flowers, it is a cold picture, of some sort of winter. And the girl with wings. It is odd because I used to believe I had black wings yet all the pictures are ones of girls with white wings.
Something has changed inside of her, this Elizabeth of this desk and the pictures. For the first time in her life, I think she is paying so hard right now, that she has no need to punish herself further for her past. These are the angels of now, bound only by a bit of ribbon, they want to be kept here, and Elizabeth sees herself in these. I believe that. A few years ago, in 2004 and you would have found the pictures of Dore’ surrounding me.
All this tells me that Elizabeth’s life, here and now, is more horrific than probably anything I can imagine. At that every little bit of happiness is fought for. Certainly it is a painful (literally, I attest!) existence. And yet, she has pictures of angels waiting, accepting the binds which keep them here. I think that is Linda, and maybe, not knowing you, that is you too. She knows she can go, but yet she stays. I think there is someone or a lot of someone’s that she is trying to protect. I will tell a story about her, or me, or both of us from when Linda and I first got together. Elizabeth was driving Linda’s car. It was in a parking lot, she asked Linda to get out. Insisted. Elizabeth (I) have had my whole life senses beyond that which is normal to an extreme sense (like hearing a wristwatch in a pocket in another room through a closed door type hearing). Linda got out. I motioned her away and started the car. She got back in and wanted to know what that was about. Elizabeth (I) explained that she smelled gas fumes and was concerned that over dinner the gas fumes from a small leak has filled the car and so when the engine turned over, the car would flash fire, incinerating anyone inside of it. Linda was not amused. Linda said never to treat her like that again. That she should watch while I (Elizabeth) died.
See, Elizabeth has never been scared of death in a conventional way. And there is absolutely no way she would not find a way to make sure Linda was safe. And not find a way to make sure each person who was innocent or vulnerable was safe.
She’s been in a garage on fire as a child. Her mother took her though the smoke to move the car they couldn’t afford to lose. She was probably nine.
I guess I am trying, in my own way to understand what Elizabeth is doing. And how sick she really is. Pretty sick it seems. I think when she thinks Linda and other people are safe, she’ll go. Or let go. And if she thinks she has become a burden in any way, or is “bad” in any way; she’ll kill herself.
When the “I” with the memories I have now first woke up I had very bad chest pain, and Linda said she had a stethoscope and she did. I looked at Linda with a sort of wonder, ‘when did she learn how to use a stethoscope?’ I thought.
She said my heart was very erratic. It hurt so bad, I couldn’t help but scream a little, or try or writhe. She asked if I remembered the last time this had happened? I did. It was early 2004 in Cardiff, and I was lying on our hallway, and the Marfan’s was acting up big time and she wanted to call and ambulance and I said, “If it is now, it is now.”
Apparently that WASN’T the most recent time, she was just trying to find out where or which Elizabeth I was.
Time for me to go now. I know, what a monologue, eh? But no caterpillar wants to die, just so a butterfly can live. So it seems I don’t want to go to bed, to wake up to jumbled memories and me, the Elizabeth of 2004 gone.
Treat Elizabeth well, all of her. She doesn’t realize how fragile her humanity is. Particularly if it is worn down. She’ll want to impress you, prove she can’t be beaten. Everything can be beaten, by the simplest of things: since gravity breaks down mountains; and rain splits stone.
But before that, I did a few postcards which brings me to two points. First, if you liked the Puricura stickers I got from Japan, now you no longer need to go to Japan to send them BACK to me of you! Yup, thanks to the internet and Puricute you can simply upload a picture and then do the puricura experience in your own home – and have your own set of blinged up pictures to cut and add as stickers to postcards. They cost $2.99 for a sheet of heavy photo paper with sticker to peel (same price as Japan) and FREE shipping in the US, and as little as .60 for international shipping. So, drop by the site as you can send a puracute picture of you by email too (for free for those without cash! I was sent one by Devi, and I pass on the love!). I am planning on buying some, maybe our kissing in the woods picture? And what other pictures?
And also, a lot of people have said, “Look, I know how much sending me postcards and that costs, you don’t have to do that anymore.” Which is all the people I love and look forward to sending postcard to. Hey, I get something out of this too, which is making something I know you will enjoy (and filling it with little jokes!). Please do not, out of kindness, deny me the thing that I love to do; yes, change the numbers, reorder the priorities but don’t ask me to leave my friends without post. Is 78 or 55 in less than two days too many? Yes. But is 25 over a week? Let’s see. How do I turn off caring? How do I turn off wanting to make a difference? Please don’t punish me by denying me one of the things I DO like to do (send postcards to y’all).
So, on Monday, I had already finished up three postcards and went down to the post office and bought stamps for them down at the village post office at the bottom of the hill. After returning my DVD, I had a sort of “OMG moment when someone told me what the Canadian Dollar was at. For 90 days it had been at par and I was used to it being between 93 and 95 cents US. Since I buy my postcards and stuff online it is mostly US dollars on ebay and community sales of people selling off things. So with the Dollar falling against the yen, prices had gone up, with the Canadian Dollar falling against the US….. Well in two week the dollar fell from the 90’s to 77 cents to the dollar. A US dollar is now 1.30 or more. Canada has a surplus budget, we are sound but we are next to a country who is having a fire sale (like selling oil at half the price; and selling off BLUE CHIP stocks like apple, which dropped…..because obviously Xmas has been cancelled and no one will EVER want an iphone or ipod?). That was bad, I can’t source stuff from the US until our dollar goes back up to 85 to 88 at least. What suddenly hit me was that the deal we had for our oxygen concentrator was with…..A US FIRM. We would have bought it already except we were waiting to see if blue cross would cover a US firm. Well, now it is a mute point, the next highest quote is Canadian and $700 more.
So I sat there on the grass in my wheelchair and tried to stop from crying for about twenty minutes. Because I felt like all the people who have tried to get me to Seattle (we HAVE the money for Seattle), were going to want their money back if we talked about ‘a few more weeks’ and how could I blame them. And right now, with my fingers already turning purple by the sidewalk, and the idea of having to find ANOTHER $700 (on the bright side, now that is only like $500 US), it just seemed so impossible that I could never even take another weekend trip much less the medical trip I needed.
I told myself, "Suck it up, Buttercup!" after a bit and continued. Up that hill as I was going to go to XXX to help make a little gift in order to send out.
Okay, let’s just talk about this sort of open secret, which is that I send out little gift packets every week if I can. Now some weeks that is two packets (or none if I am very sick) and some weeks that is twenty. The problem is that with the Grand Mals and memory loss, I don’t know who I send to in the past. Plus I send things to people who sort of come into my view as 'that would be good for XX!". I am not playing favorites if you haven’t gotten anything because I give gifts based on who I think of and if you haven’t gotten anything, it is because I haven’t found the right gift for you. That’s it. Nothing personal. If you comment on here, you will almost certainly get a gift at some point. If you send me an gift and it isn’t like hate mail or something which has to be confiscated by Homeland Security, you will get most likely get a gift (If Linda remembers to write down it was sent!).
However, remember – I have a brain that is swiss cheese, boomed many times and also for several weeks I got Nada (as in Zip), and for other weeks Linda didn’t keep a list. If Linda doesn’t keep a list, I don’t KNOW who sent the gift. So I can’t even EMAIL you a thank you. So besides the “postcard project” there is the “surprise gift” project, which you can’t really sign up for, because I don’t know what I am going to send until it is sent! Sometimes however, I put pictures of things I have to give as gifts on the blog (for example the Native Art Print – and everyone who said, “Wow, that is really neat!” got at least a native art sticker on their next postcard…because I wrote their name down! Another time I put up something and no one said….ANYTHING. So I still have that because I don’t know who would be the perfect home for it!).
So right now I have gotten some stuff and I need to have a store do XXX to them before I can sent them as gifts and I was headed there (I try to get things that are unique, irreplaceable, match the person but also within my ‘mad money’ budget; sometimes I go overboard - gee, Elizabeth go overboard? Is that possible?). Along the way I passed what used to be a “For Lease” sign but was now the sign of Rob Reid For Mayor. They had made a sort of ad hoc ramp going to a two ton door and I grunted my way in to find people stuffing envelopes of Rob Reid for Mayor and info packets. The thing is that Wayne Hallohan who was running for Fairfield City Council spot gave me Rob Reid’s Brochure last week and I knew I knew that face. Pieta Van Dyke who is apparently already elected to represent James Bay was there also (in front of Pic a Flic handing HER leaflet).
Well, when you are a person of energy fluctuations like me, you go when you have energy, so I asked to speak to Rob. They said he would be back, I said I could wait and wheeled around and saw Pieta stuffing envelopes. Her face said she recognized me but wasn’t that excited.
I told her I had been working on the bullet points Wayne had asked for and I said that number one, considering the population of James Bay and Fairfield over 65 was to get more blue badge parking spots. I mentioned that Thrifty’s Foods of James Bay, where my grandfather shopped till his mid 80’s is half full of Cars with Blue Badges and has…two spots. She replied a bit grumpy that the parking lot was private property.
I said, that may be, but since Thrifty’s Foods makes such a big advertising issue about hiring the disabled (developmentally challenged from a particular program only!), I am sure the owner, a local, would understand the implications of pointing out that while he might HIRE people with disabilities, those who have them can’t SHOP at his store.
Then we got onto housing that had passed the counsel, how the new condo development NEXT to my parents place was to have 20 low income apartments and the council reduced that to TWO. Peita said quite firmly that those ‘cost the developer’ and it was complicated and implied I should be happy with the two instead of the twenty that the previous city bylaw required. I said, “With a half million dollar condos, 18 condo’s means 9 million dollars, I really don’t think it was that complicated, when you have a choice of nine million or making affordable housing."
The entire room, which included it turned out Rob’s adopted mother was listening to our discussion avidly.
So I brought up the new Homeless building, I said, “Do you know how they are making that homeless building?” And everyone was “no, no” (Peita was silent). I said, ‘they are destroying 14 disabled housing.’
Pieta burst out, “But all those people have been relocated!”
I turned and said quite vehemently, “No they haven’t! I have the same care workers they do, and right now the ONLY facility to get care workers which is wheelchair accessible for people my age is the building between the needle exchange (several hundred people shooting up) and the police station. I was told ‘You don’t want to live there!’” I turned to Pieta, “Do YOU want to live there!?”
She didn’t reply (which sort of WAS a reply!) but said, that well, the people who were moved out would get a chance to apply to get back into the building (which will house the 50 homeless considered the ‘worst cases to house’).
I told her and everyone that I went to the ONLY Respite in Victoria available to someone my age with a disability, the Percy Respite and that there was homeless housing above that and three to four times a day the fire alarm went off, because of smoking or a fire starting in the rooms above us. I said for someone with a medical condition, or the need for sleep, that is a serious problem but otherwise who WANTS to live a building where the fire alarm goes off several times a day? I turned to City Counselor Pieta and said, ‘do you?’
She didn’t respond (again, an answer of a sort!) so I finished by saying that my original idea when I heard it, since these were homes of people LIKE ME, was to have ALL of the city counselor’s homes RAZED, build housing for homeless THERE and THEN, offer to take the city counselor’s name to live back in their house again. How would that be enjoyed I asked? Pieta found she had something to do which took her not only away from me but out of the building.
Quite honestly, my feeling was that since James Bay is made up of people who are vulnerable and dependant, and if she isn’t ready to ask the owner of thrifty’s food much less the city counsel to add more blue badge parking spots, I will have to see if I can run against her.
I stayed on because the best way to know a candidate is to know the people who surround them. I offered to stuff envelopes and they were very surprised and I said, hey, I talked to Rob (which I did about putting in legislation about accessibility in new buildings and when current ones are modified: “You know…like your two stores…” But I got the feeling I was just another ‘special interest’ person to him) and that since I took up his time, I might as well give back. So I met his adopted mother and the other people and found out things. 1) Almost all were seniors and 2) all were runners. Indeed they had the same attitude as my grandparents, that if you eat right and keep fit, you can be 80 and do marathons. Thus, people who use walkers are losers.
I told them I did lesbian advocacy before when I was in the UK. And one woman asked if I know this man who played Jazz in a wheelchair. I refrained from saying that no, much like blacks or gays, all wheelies don’t know each other (I had previously made the point that I was a RUNNER, I had done many marathons, which sort of amazed them and I said, “A lot of people just see the chair but, I wasn’t born with it stuck to my butt!”). She said that he was such a “nice” advocate and pointed out “nice” things like how when disables go they usually have ‘Able bodied People” with them (I could tell she managed to refrain from shortening that to “people” v. disabled), and since how the people WITH them spend the money, it is good to have disabled.
As you can imagine, I responded tactfully. I asked, “How much do you think you spent in disposable income this year?” She “um’d” for 30 seconds but couldn’t come up with a number. The whole room was listening intently. I said, “I spent $40,000!” There was a collective gasp.
I said, “I got this Wheelchair from Motion Specialties,” (there was a voice, “I know them”) I continued, “a Victoria business, $5,500. A Bed, $4000+, Walker, bench, bars, arm rests, and I am going next week for a fitting for another chair for $20,000.” I let that sink in for a minute and then finished, “So tell me, who makes more of an economic impact on Victoria, me….or a tourist?”
While they were digesting that, I said, “You may not see them, but there are a lot of us, and we all spend; and spend it here in Victoria. For example hundreds to thousands people having meals delivered, meals on wheels is $7 for lunch $9 for dinner: anyone here spend $15 a day on food, every day?” No one did.
I said, “Know how you can’t go down the street without seeing someone in a scooter on the sidewalk.” They all nodded (there are so many seniors that scooters are an every block occurrence), “Those START at $4,000.” I said.
“My goodness,” one of the core volunteers said, “I had no idea!”
So we talked on but I think I made more of an impact talking with the people when then candidate was out of the room than talking to him in, like talking with his adopted mother (who gave me a cookie), he came back, surprised to see me there. I headed off to XXX to get the things done. It was an hour stuffing envelopes and taking the pulse of the people around the candidate. Is this what community activism is about? I dunno, new to me! Maybe I helped them understand a little more that we, the disabled, in Victoria have little choice and are seen as just money machines to be sucked dry. Maybe not.
The only other major change I am trying get the candidate to stop doing is putting “disabled” between, homeless and drug users or addicts and street workers as in ‘I plan on addressing many of the issues of the overlooked like those with severe untreated mental illnesses and disabled’ (Rob), or ‘the issues of homeless, the needle exchange, disabled, drug addicts and the sex trade.’ It seems we are never between the Business owners association and the woman’s business council, odd that?
Last night I went to badminton and you know how I say that all people become advocates eventually? Well, to make it very short (as I have been very ill tonight, which is why this posted at 2:30 am), when we started playing Badminton on Saturdays there was a foursome who wouldn’t play with us: Cheryl and I. As us wheelies would bring down their game. Well, I played with one of the guys from that foursome last night and we won but while playing he told me his friend had an accident and was a high functioning para now (low L-injury) and was out of rehab and looking to get active. He wanted to know about the boxing I did. I introduced him to Liz, my volunteer from Recreation Integration and talked about wheelchair bikes and racing chairs. Less than a year ago, this guy refused to play with me, now he wants to know how his friend can BE like me. I guess that whole TAB: Temporarily abled bodied is a bit more realistic than we anticipate. And that I say, we all become advocates eventually.
I won two games, and was in a good grove. On the way home, after 9:00 pm, I hear scrabbling like a squirrel but heavier. I saw a Raccoon climbing up the tree I was passing, I stopped and looked at the tree opposite and three feet away a small raccoon stared back at me, the mask, the little eyes. I looked for peanuts under my chair so I apologized and moved on, when I saw two more run across the empty street. Linda had seen a family here over 2 years ago, but I never had. It made me happy that I finally did. And last week, while driving back through the same area a brown barn owl, like one I had seen in a tree near where the Raccoons were two years ago flew in the sunset in front of our van. It has been a good few weeks; from Rhinos to the local native population: squirrels, raccoons, owls and whales (now if I could only see a cougar!).
I don’t know if I will have the energy to go to a “candidates gathering” but I definitely want to press home to whomever becomes mayor or city council that if they are not going to be the defense for the vulnerable then I will ensure they wear the name of shame. Of course I will probably say it SLIGHTLY different than that. But then, knowing me, I might not! As I said to Rob Ried, “Right now, Victoria is a city which is in Federal Violation of discrimination based on disabilities, and if you win, you inherit that. I just thought you should know.” (See my tact, I didn’t mention my appeal to the Federal Government to declare martial law and take over the city as part of a city under “civic and populance crisis”).
Tuesday, October 28, 2008
But I want to point out that my park is Disability friendly to all forms of impairments. First, Cheryl needed to practice HER powers as Squirrel Whisperer to tell the squirrels that 'hey, got a bad back, can’t be bending down for you, as that hurts me.'
Evidently the word got around and soon Cheryl had squirrels accommodating her impairment by climbing up her leg and sitting there to take and sometimes eat part of the peanut. Not just once but several times. This is actually a different time when the squirrel decided to hang around LITERALLY on Cheryl’s leg, and check the peanut for perfection. So obviously she has very good Squirrel Whispering Powers. And not only that, as she said, “This is the most intimate action I’ve had in a long time.” Shhhhhh, not so loud Cheryl, the Parks Service Canada frowns on interspecies intimate fraternization!
Cheryl is heading off for a bit and I wanted to make sure these pics were up for her to see before she left. I will be doing another blog tonight as well, about badminton, me talking to the potential mayor and then stuffing envelopes (wow, now I’m an official political volunteer…), seeing Raccoons last night, an Owl and other stuff. See how I am taking it easy, only two posts a day!
Tourism McClung - come to Victoria and test your Squirrel Whisperer powers!
Monday, October 27, 2008
Relax, it’s not the dreaded post saying Beth has flown away. I wanted to share the emotional weekend from my perspective as it affected me differently from Beth. Beth asked me to post it here as she thinks it is important for you all to hear it and not every one goes to A Girl’s Gotta Fly.
I need to back up and start with Wednesday’s entry “A Signal for help: In distress.” This blog made me teary-eyed and my heart ached for Beth. Well, it also caused panic when Beth asked everyone to put out the word to let the sick, the lonely, the needy know that she’s out there and wants to let them know someone cares by sending a postcard. OMG, how am I going to pay for this especially with the exchange rate so low? That’s a lot of postcards, stickers and postage (although Cheryl pays for most postage). And more selfish thoughts… never mind the finances, all we’ll ever do on weekends is postcards. I’ll never be able to catch up on all the other stuff I need to do. Less selfishly I wondered how is Beth going to have the time and energy to do all this – searching for more cards and stickers to buy and then putting them all together.
But back to the blog, Beth asked for help, not just for names but actual help in getting her through the rough time she was having. And I’m not sure how many got that it was more than just names. She’s a strong person but some days the burden is too much for her to carry. And I am guilty too, of thinking that Beth will bounce back, she always does. But it is getting harder and harder for her to do that. Not just emotionally but physically too. Her body is weak and she’s wasting away – her legs are sticks, her butt is non-existent, her pelvis is sticking out in the front and back and her upper body is all bones and hollows. I want to get her some new goth tank tops from her favourite store – but they won’t be XL’s this time – probably mediums.
Friday night she gave up eating and talking – it was too much effort. She also stopped taking her meds to see what life was like without them. It’s a scary place – within 12 hours Beth was just an empty shell. She was fading in and out of consciousness continually, she couldn’t move, her heart beat erratically, not subdued by the beta blocker. Her whole body was in extreme pain.
That night she slept a really long time. But it wasn’t a recuperative sleep. When she woke she was unable to lift her head or arms. I usually just have to lift up her legs and swing them to the side of the bed and she does the rest. That morning I needed to sit her up, wrap her arms around me and lift her onto the indoor chair. I also needed to push her to the bathroom and put the toothbrush in her hand and help with all tasks of getting up. Normally she does this on her own. It takes a while, but she’s independent.
I wondered if this was how the rest of her life was going to be. And how much longer did we have together? I saw Beth slipping away from me and it was completely out of my control. It made me scared, it made me sad and it made me angry. But I’m getting ahead of myself. Back to Friday…
One of the most difficult things for Beth during the previous 48 hours was watching the emails roll in from people saying variants on ‘XX told me about you, you can send me a postcard, here’s my address’ like they were doing Beth a favour. Or the one reader, who although probably having good intentions, posted in a forum asking readers to ‘give this woman a purpose.’ Like Beth had nothing to do and was listlessly wasting her days. WTF??? This really pissed me off. Don’t they think Beth has a purpose? Do they think she has time to kill? Do they think her project is a ‘nice little hobby?’ Beth doesn’t want to fill in some time (she doesn’t have nearly enough of it). She doesn’t want pity. She wants to make a difference in the lives of people who need someone to care. It’s a precious gift of caring, time and energy wrapped up in a postcard that she wants to share.
After telling me about the ‘pity call’ Beth stopped talking. A couple hours later she wrote “Don’t blog angry.” Now I have a love/hate relationship with the postcard project. I enjoy stickering and stamping postcards. I love that it’s a way for Beth to make a difference in people’s lives. But I am also jealous of the project (a new revelation to me today in my counselling session). Most of the time when I am not at work or sleeping, Beth is working on her blog or her postcards. And on weekends it seems like postcards are all we do – and I can’t fit in all the other must-do’s of daily living like buying groceries and even preparing meals. Take this weekend for example. Beth and I worked out the math – a total of 59 hours were spent this weekend working on 55 postcards – and that doesn’t include the many hours involved in sourcing the postcards and stickers online. Sure, it’s not one person, and if it were, it would take Beth a heck of a lot longer with her less nimble fingers. The reduced ferry sailings mean we have about 30 hours with Cheryl – not a lot of time. In fact, this weekend Beth matched postcards with people while Cheryl and I did all the stamping and stickers and then Beth raced the clock to write the messages before Cheryl had to catch the boat. Beth didn’t get to do the fun stuff like deciding which stamps to use, what story could be told, or perusing through the box of stickers to find just the right ones. It’s like an old-fashioned quilting bee where we talk about the recipients – what do we know about them, what are the best stickers/stamps to put on their card. Beth was so busy matching that she couldn’t be part of the discussion. But I digress.
Back to Beth saying she wanted to quit the postcard project. Part of me was sad that Beth wanted to wash her hands of the project which did good work. I think the ‘pity call’ turned the project sour. But also, with a few exceptions, she didn’t know whether she made a difference. The rate of return on her investment was negligible – and even though she doesn’t ask for reciprocation, those packages and/or postcards she receives gives her validation. She doesn’t ask, but I believe it’s what she needs. Her time is marked by weekends – consistent visits from Cheryl who comes bearing mail – orders she’s placed for supplies and mail from her readers and adopted family. She is excited to receive postcards and packages. It gives her something to look forward to, and she’s one sad girl when there’s nothing there except from Wendryn who faithfully sends her a postcard every day. (In case I haven’t mentioned it before, you’re one special lady, Wendryn.)
But then there was another part of me who was happy that Beth was going to pack it in. She’d buy less supplies which means less time she spends surfing the net. We’d also have a lot more time to do other stuff and there wouldn’t be a constant weekend pressure to get xx cards done before the boat leaves. I started thinking about things we could do instead as I knew stopping the postcard project would create a vacuum.
In amongst all these thoughts a question popped into my head – what if Beth really only has 30 days left? How am I going to make those days count? Should writing postcards and all that goes with it take up so much of Beth’s time and our time together? It’s a noble project but what about the relationship I have with Beth? What have I done about nurturing that? Are we so busy that we don’t have time to just BE? Watching movies on the couch holding hands, feeding the squirrels, sharing dreams and feelings seems more important to me. So, this is something that Beth and I need to figure out – how do we want to spend those 30 days or the next 30 days or the 30 days after that?
I think we’ll still do postcards, and I’m cool with that, but maybe not so many of them. And fingers crossed, we may even take this weekend off. Have a romantic weekend or hang out in our PJs all weekend watching TV or maybe have some of those deep discussions about how we want to spend the rest of our time together.
I’ve written this entry over the course of two days. Yesterday I made a list of things that you can do and some of you have already offered to do these before I even posted it. But in case you’re still wondering…
1. If you haven’t already done so, let Beth know whether the cards she sends you makes a difference in your life. She would love to continue sending cards if they do. If we don’t hear from you either online or by snail mail you may find you’ve been put to the bottom of the list.
2. Return the favour and send caring messages on postcards to Beth. Physical messages are the best but please don’t spend money on her if you can’t afford it – no giving up grocery money or anything like that.
3. Continue to send Beth names of people who need postcards but first weigh how much you think the person needs a card against the energy it’s going to take Beth, Cheryl and I to make them.
4. Contribute supplies if you are willing and able. We use US and Canadian postage stamps for domestic and international shipping. Who knows, if you live in Britain or Australia and want to be our courier services send us your domestic stamps and we’ll put all the postcards for your country in an envelope and send it to you so that you can pop them in the mail box. Hmm, might need to have you sign a confidentiality agreement or something as you’d have people’s addresses. Might have to rethink that one. Postcards and stickers are always welcome – particularly ones suitable for kids like baby animals. The kids are near and dear to Beth’s heart (and are so much fun for us to do). This week we sent 6 post cards to a therapeutic riding school for kids with disabilities. They see about 200 kids a week and since we couldn’t do cards for them all we instead sent a card to each horse, or rather the riders of each horse. So each batch of riders has a postcard they can read and enjoy and leave for the rider after them. Now that’s making a difference!
I have to go sleep now, will talk about being a disability advocate in the potential mayor’s office today later. For those looking for a Yuri (girl/girl) love e-card, or a girl/boy anime e-card to send, try HERE. I recommend 2, 5 & 8 for girl/girl – particularly number 2 – and maybe 1 for hetero. No, doesn’t have to be me, I mean, there must be SOMEONE else you know who could use an e-card, right?
I just wanted you to know I am off to sleep, going to badminton to try and restart the body, my goal is August 2009. I’ll make it or die trying! (laugh, please, laugh). That was yesterday, and today is today. And this is my arm and wrist. Reality didn’t go away, but I am not going to JUST lie down and wait, I am going to put myself in pain tonight on the hopes that life changes. We have to hope and try right? Oh, sent out three postcards today. Part II later.
Sunday, October 26, 2008
I have a degenerative and terminal condition, I have several secondary conditions of which a couple if left untreated, which they seem to be, are terminal as well. I have several conditions which are conditions from the secondary conditions (tri-conditions?). Any of these conditions would be considered BY ITSELF, a lifetime disability. We don’t really talk about these because they are so unimportant to the main fact; that I continue to degenerate without a single remission. Yes, I have some drugs which hide these effects, or minimize them showing, but do not slow their degeneration.
I have reached the part where I have a path in front of me and I have to make choices, which is somewhat ironic because I have dementia. Remember that people with Alzheimer’s have dementia for a couple years sometimes before being found out. The woman that cries because no one will give her toast because she can’t remember eating the piece she had 2 minutes ago, is looking at people eating toast, making deductions (“They have toast, but I don’t!”) and acting on those deductions. Just because I am intelligent doesn’t mean there aren’t day I don’t I know what year it is, or day, or what city I am in or that I don’t need to be watched to ensure I don’t wander off.
I don’t know how long the path is, or where it goes but I know from what I’ve seen that it isn’t that great after the first bits, and probably has a few monsters along it. Linda and others are saying that I’ve lived enough of my life for other people and maybe it is time to live for me, for them. I think near the start of the year I asked for a family, a genuine family because mine has left me, and people responded. I guess some thought it was a bit like getting a bunny or goldfish because some have drifted off, their AB lives moving too fast to accommodate me, or they keep their distance, which is pretty much I expect from family to be honest. Some others, took that seriously. Some people wanted to be there for me, and have been.
I am alone, I am in pain, I am frightened. I have no medical assistance even to the level of painkillers which I got from a walk in clinic. I spend most of my day TRYING to get a better quality of life so telling me what I “should” be doing, unless you happen to work with Canadian paperwork (remember it took a YEAR, and several 14 page documents for them to determine I would never work again, am likely terminal and without income and due to a lapse of an agreement with the UK, would not be helped by the Canadian Government), please stop telling me how I can instantly improve my life. Because I am tired of failing everyone by not being exciting enough or not in pain enough, or not improving enough.
You want to help me, convince me that I am not alone. No, not that you will continue to watch while I die but that you will hold my head, that you will hold my hand, in one way another. I know that in the next few months with US thanksgiving and Xmas that people will be too busy to care anymore, they have their ‘real’ families, and real friends and the online film of Elizabeth’s Death just can’t compete. First off, I do not want a single Xmas card. I don’t keep Christmas. And if you need to WAIT in order to show you care about someone, then I have failed. I am in my own way ruthless because what I demand, not ask, demand from my friends and family is CHANGE. It is what I demand from myself. And if you have a habit of only showing that you give a damn about other people at Xmas, and you try to include me in that, it will be returned to sender. Because, what, you can’t look back over the last week and see a human being in emotional, physical and every other kind of anguish? There are two types of people, there are those who act (a.k.a. you change how you act!) or those who keep walking.
I started the postcard project because I wanted to believe that humans could care, would care about other people if they were just given a chance. Some, about 4 to 5% met that challenge. About 50% we never heard from. And because I don’t know which person NEEDS those postcards, I just keep sending. It isn’t my purpose to judge. Except now I don’t have the energy to continue. And I as I have said before HELP! HELP! HELP ME! MY GOD HELP ME!!!!! Apparently some might have missed the earlier notice. I haven’t received a single e-card or the like.
I guess, it isn’t just the Christians who say they will think of you and then stay away. I am in the equivalent of a burning building. And I’m terrified. Don’t you get that. I don’t have head control some days, I pass out frequently, I don’t have hand control. And I am here, past midnight, spending all the time since I got up writing to my friends. Because you are my friends right?
See, the point of this blog is that I am not only just like you, that I AM you – I got a disease that ANY of you could get, I am where any of you could be and I am being treated like ANY OF YOU COULD and will be. And how you treat me and the others who come across your radar, remember because that is how you will be treated. But now, while you are AB, your life, like other’s lives fare from the reality of where I am, will always be urgent. And yes, I know I come behind the milk you just ran out of, and the shopping list that needs to be done.
I can’t return all of the 20 emails, hate mails and demands every day. I try, but I can’t always, often. Sometimes because I am on the floor making the funny dance. Sometimes because I am staring into space. This is how my world ends. I have kept every promise that I have made and sent out a card to everyone who requested it; that will probably change soon, just out of physical need. We did, the three of us, 128 postcards in 9 days, and excluding one person received back, um, 4 (see 4%!). It cost us about $500. That’s the plain reality. I have no money, and I don’t spend it, what allowance I get I spend on others.
Okay, so my life isn’t how I planned it. I have a terminal disease just when I was going to be the bee’s knees, I had won award, I was doing not bad in national sports and hoped to move up to mid-rank in the US and Canada in my sport in the elite level. Sometimes you TAKE the road less traveled and sometimes it comes for you.
Sure, I would love to spend my time as an AB again, doing a full time job and having fun and reading 5-10 books a week, it was fun, it was exciting, it was disappointing, it was LIFE. Right now I have life too, but one that seems out of synch with everyone else. One where the people I get along the most with are those who are out of synch WITH me.
Do you know the only times I am truly at peace? It is when I am racing. Because there is simply no what anyone could reach me to save me in time if my heart went. And I have two choices, to push, and finish or to quit, and I won’t quit. So I either finish or die. Every time I go out, I know that is my choice: finish or die. What else is worth five days of pain so bad I can’t sleep for two days? But here, with everyone telling me what I need to be doing, what I should be doing, I am confused, I am often incapable, I am this girl. And that isn't a metaphor, I am THAT vulnerable, I am that pleading for someone to come and help me, because I need to be held. If not more.
I want a life where there is fun again. I haven’t really smiled in probably a week. I want to smile again, I want my life again. I want to LIVE and know the joy of living, and yes, dealing with the consequences. But I can’t do if I am spending so much time recording my best two hours in a week and taking photos and then thinly spreading them out over the rest of the week in my blogs. I can't LIVE if I am lying to everyone about okay my health is because they don’t want to deal with it. Okay, I am very ill, I can’t move by myself often. And that is with my pain masking drugs. I think Linda describes it on her blog. I wish it was a different way, I wish I bounded out of bed looking forward to a new day, a new day of action. Truth is I use dialogue as a way to focus against the pain and to stop myself from passing out. I want to be the impish girl who is trying to make the world conform to her, but I gave up that illusion long ago. Without help, and I mean people help, that isn’t going to happen. In fact, I can say, “Suck it up, Buttercup” and “I’m going to take back my life.” But the truth is that I am going to exercise tomorrow because I am trying to do something to extend my life a few weeks, because I made promises to people, that I would try until the end.
And I keep my word, as much as any human can. I will be here, still trying, waiting.
I guess the question is, where do I apply for someone to care about me, just me, for three full hours a week?
Saturday, October 25, 2008
Sorry, I shouldn't be a bitch, please let me know if you would like any of the following (there is likely to be a few months delay until delivery):
Titanium manual wheelchair (17 inches wide)
Some electric wheelchair ($18,000) will be here in a month or two
An indoor wheelchair, E&J, good for getting around the small doorways (width 16 inches)
Hospital bed with electric head and foot raising along with pressure mattress
Um, one old oxygen converter/concentrator (sic)
Shitload of postcards
A walker for an extra-tall person as made by Dolmanite
Shower bench with back support and grab bars
If you have seen a picture of something you would like on my blog, let me know. Um, a lot of the stuff like my books and that I am leaving for Linda to auction off to pay for my funeral and help her pay off her credit card from medical bills and Elizabeth bills.
Thursday, October 23, 2008
I told him, I’d try to make sure to have my next grand mal down here, since that seems to make people run like hell.
Then he got onto through guns somewhere, and this idea that if your heart stops, you die. I told him, “Yes, if it stops for like 2 MINUTES!” But no, he was convinced that if a valve stopped working in your heart you die, that your heart would EXPLODE! I told him, “put me on a monitor, if you want to see a heart stop.” My heart stops every day, it is part of the autonomic failure. And before that my heart beat so fast, it wasn’t pumping blood, and before THAT, I have a genetic condition which causes backflow in a valve. And between those, I have AV nodes in two different sections of my heart, which means two beats, or no beats, or a beat only on one side. And so to hear this person raving on because he felt his movies were “Accurate” enough, made me want to invite some EDS friends down and also the fact he seemed too DIM to understand that THESE ARE the actually conditions people live with, that people (like ME) do 10K races in wheelchair with. That people know SO LITTLE about disabilities and about how complicated the body can fail and you can still manage to live, that I felt even more alone. I struggled up the hill, I cried. I was too weak at 5:00 to get into bed unassisted.
Days like this I feel that sometimes the only person who really gets me is Death. And that he (or she) knows exactly what limits this body can take and pushes them again and again. And when I try to explain to people where I live. Where do I live? Okay, I had a connective tissue disorder my entire life which stopped me from being able to walk until my legs were operated on. Before that I was in pain that stopped me from sleeping and after that I was in constant pain. Pain that made me moan in my sleep. That was life. That was normal. That was jogging and playing the double bass until you couldn’t feel your arm and the bow fell out of your hand because your spine presses directly into your rib cage and there are nerves trapped there. Life.
Where I live now? It is not 10 times the pain, not 20 but often 30 to 40 times that level of that pain. I think of Cheryl and I wonder, how much more is her pain now to take a hike in the Hoh than her worse Ranger Training? I used to out-train everyone. People would be ill, looking at me, they would say, “You are insane McClung.” And I would be white from the pain and I would be standing there and I would say, “NOTHING is impossible.”
Now, now a “good” day is where I only bleed from one or two orifices. A good day is where the pain doesn’t make me pass out more than four or five times. A really good couple of days I don’t hallucinate from pain, or go into deep shock and STILL have to do what I need to in order to live. I don’t like talking about pain because pain is pain and everyone’s pain is equal, or individual. I am not trying to say, “Hey, I am the queen of pain hill!” What I am saying is I have had my limbs crushed in doors and NOT felt it because it couldn’t get through (turns out an air hockey puck at XX miles an hour to my fingernail tips did, for like, a minute – then it didn’t). See, I can fly OUT of my chair, bruise up half of my body (have strange bruises all over my left side which I can’t remember) and NOT feel it, not just because I can’t feel my body, but because SO WHAT. Drag me behind a car….so WHAT? I have my heart stop several times a day to a constricted vascular system. That used to send me to hospital, now it is under, “Irritating!”
I am sorry, you readers deserve better than this. But this is where I live. Today, in my condition, it was difficult to imagine me reaching New Years. I think, “Am I buying postcards that will arrive after I am dead?” Other days, the better days, there are more months. But it isn’t some imaginary far off “oh in six or 10 months or a year or two.” I will STARVE to death because you can now see my front and back of the pelvic bone as well as all my ribs and I eat what Linda eats. I will eventually/soon/already have the anemia count of someone with lymphoma. I can’t go to ER, I can’t go anywhere. I am OUT of time. I do postcards. I get frustrated. Read the last post again. There is something broken in me. It is part that says, “Nothing is impossible!” And it doesn’t mean I’m not going to die, it means I should ACT as if I am not going to die. It means I should sign up for boxing class when I haven’t been able to get out of bed for two days! And I can’t. I haven’t been able to smile. I wasn’t going to blog tonight. But then, I had made a commitment.
Wednesday, October 22, 2008
In the office, the specialist didn’t know or care about my conditions, and treated me as such, “Do this..”, “Do that…” all this a few hours after watching on Boston Legal one of the partners successful petition the court to force the hospital to KILL her father with a morphine drip because he had memory loss, long periods of dementia and incontinence. “He is a shadow of his former self!” They said as proof positive that death, that KILLING him was better than watching with pain, his fear, his limitations, his disability, his disease progression.
I too suffer from fear; many of my old fears have return along with new ones. Because I have seizures or TIA’s and cannot remember the events which cause the fear, I just have the fear: Fear of new night workers, fear of change of schedule, fear of things moved in my study because if I have a seizure I will never find them again. I cannot depend on my mind. My disease ALSO has seizures, and grand mals as part of its progression, much as Alzheimers does, the disease that makes someone a ‘shadow’ of themselves and thus worth killing. Or as the judge said, “I don’t play God, but here the patient is IN distress and there is no good reason for them to be so” (meaning that they should die).
Well, guess what, I AM IN DISTRESS. I cannot remember NOT being in pain, I cannot remember a day I did not wake because of pain, I cannot remember having the energy to get all ready to leave AND leave this apartment by myself, I cannot remember when Linda last laughed at something I said, or when I last laughed. I haven’t smiled once since leaving the specialist’s office. One of the theories during brainstorming with Cheryl was that the specialist might want me to have MORE seizure cycles, and larger ones, so that his job would be easier (the reason for removing the drug to both stop seizure cycling and the drug to extend the time between seizures).
I did not, I do not know what I am fighting for, and if I want to go to bed, if I want to get up, if I want to breath, I have to fight. It hurts to breathe, every breath. That is one of the reasons I am on pain killers. The left side of my body has atrophied so quickly that now my wrists instead of being “stick thin” actually bow IN (like the children you see on the starvation pledge drives in Africa). I don’t have any fingers left that are thick enough to hold my rings. But those are NOT the reasons I lay down my head.
I lay down my head because for a moment, the specialist was so convincing, in that all he needed to do was label me and I could go back to ‘normal’, that my hope for any sort of a better life, for ANY improvement in quality of life led me. It led me out onto thin air, because not being able to remember more than a day or two at best, being afraid of most people and not being strong enough to leave the house. He could offer me hope, help. And when it was taken away, I fell all afternoon: until finally I hit.
What is, however bad that is, is as good as it is going to get (the hope that Seattle holds regardless – a trip I FEAR, for the reasons that I am experiencing now, and HAVE experienced so many times before – If I have it there, then I truly am, just waiting around to die). This is the place where I am, and suddenly, I couldn’t find a reason to keep trying. I wasn’t interested in self harming, I wasn’t interested in even peeing, I just looked at where I was, at what was, and I have no plan, no dreams, no trip, nothing. I have no reason to raise my head in order to take the effort to transfer to the toilet so I could go to bed. What did tomorrow offer?
Sometimes, when I am doing a 10K in the racing chair or when I am challenging MYSELF, should wear a sign saying, “When I fall, LEAVE ME” because people don’t get sometimes that when the only thing that matters in the whole world is that 10K and finishing, then either you get up after falling, or you stay there until you CAN get up.
This is not one of those times. This is a time when I would say, HELP.
I am not fatigued, or burned out. In fact, I just did a post for The Postcard Project before this one. And I know full well that I am ‘but a shadow’ of myself, that people like it when the ‘old EFM’ comes out for a while. Except I don’t have the energy, the health, the ability to BE that person, not for very long. And yet, I am not going to wait around to die, or let someone kill me because gosh, it is so painful to see Elizabeth so feeble compared to what she was.
I wrote a new post, an update on the Postcard Project. And tomorrow, it is my intention to write to the CBC and CNN and MSN and anyone else who will listen to tell them about the Postcard Project. That’s why I wrote the post.
This is where I ask for help. Please, that in any place you can think to link or talk about it: anywhere there are people who are disabled, who are depressed, who are lonely, who are in isolation who need a tangible proof that someone cares about them, that you create a link to http://efmpostcardproject.blogspot.com/ - the postcard project.
Why would I do that? Why, when so exhausted and looking at months and months before anyone will even, maybe officially help me, as I grow weaker, would I want to double or triple the work I do: that I PAY to do. Because I do not know how to make my life better, or make the spark inside of me come back alive, but I will damn well not give up on trying to make someone else’s life better. SOMEONE has to try. If this whole medical experience has taught me anything it is that SOMEONE HAS TO TRY AND CARE. Right now, I see the trees, I don’t see the blue of the sky, or the beauty of the leaves or the majesty of the forest, I only see a maze of unending trees/obstacles to nowhere. That is where I am mentally right now.
And yet, I will act as if I will one day see the beauty, be part of the beauty. Until then all I have to offer is what I right now, feel devoid of, the genuine caring which would make my quality of life better. The thing that would make me smile. A tangible something to make me believe again, that life is going to be more, than just “getting by one day at a time.” I don’t want to be “getting by”, I want to be glorious, to do amazing and stupendously stupid things just because they popped into my head. I want to take risks, I want to LIVE. And while I am breathing, one painful breath at a time, right now, I am not LIVING, and I don’t know how I will get there, but I believe I will.
And as much as one fairly ill human can, I will do what the USA promised and has rescinded, what Christianity promised and rescinded, that humans are not disposable. Send the word: that to anyone with a computer or with a friend with a computer and an address, send me your tired, your poor, your huddled aspect of the self, your downtrodden, your isolated, your bedridden, your unvisited, the people made invisible by disability and those who fight their invisible disability, I am here.
No, I will not give money, I will not give full replies to every email, I am simply not able to. But I will, if you ask, send a tangible evidence that I spent about three hours making something JUST FOR YOU. I can offer evidence that I care, and will continue to care about YOU. Please spread the word: to some, it is just a postcard, and kind of cool, and that is fine. And to others, it may be the only individually addressed and caring post they receive this month. I don’t make qualifications, if President George Bush asks me for a postcard, I will try to make him a postcard that will bring a smile to his face. Likewise, if Dr. Atwell-Pope asks me for a postcard, I will (though yes, I did put her under investigation) spend three hours to make a postcard SHE will enjoy, which will brighten her day. Quite honestly, I think there is a long list before either of those two are likely to ask, but that is the help I ask.
Because I don’t know what else to do. And because I know how much it hurts when you have a future that isn’t one, and you have a present day which looks very bleak indeed. I don’t know how to help myself, I don’t know what to ask for, but I know what I can do. I can make postcards. Help me find the people to send them to.
Tuesday, October 21, 2008
*He wants me to stop all use of diazepam as ordered by the hospital (3 to 4 pills daily). The hospital ordered it to increase the efficacy of my anti-seizure drug, Lyrica due to the double blind study (as well as many others) as published in the Archives of Neurology 2002 and others which show that it helps people have longer periods of times between seizures and less seizure. His quote is, “That is their opinion, but I have mine.”
*He wants me to NOT use Ativan DURING a seizure series, despite that it was a) prescribed by the hospital and b) According to Anticonvulsant therapy for status epilepticus in 2005, it was found in a survey of 11 studies of over 2000 patients to be the most effective for treating severe seizures (tonic-clonic) and severe seizure series. (the second most effective: diazepam)
*The reason for both of these is that they are “addictive.” Seizures apparently are not.
*He believes based on what he has heard that I have pseudo-seizures.
*When I asked him why, when the US epilepsy society has 500 “common” seizures and 2000 rare seizures he has, without tests concluded I have a type of seizure that is lifelong and does not respond to treatment? And how many patients does he tell, on their first visit, without tests, that they have ‘pseudo-seizures?'
*He did not answer either question (though I asked them several times), he is not initiating treatment. He has however had a long talk with my GP about “the type of person I am” (My GP believes because I had a complex partial in his office instead of a “Grand Mal” that I had a ‘pseudo-seizure’).
*He said he believes that it is unlikely that someone my age would develop epilepsy. I said the epilepsy Society of Canada said 40% of people develop seizure disorder in adulthood due to things like PARTIAL STROKES (hand raised) or vascular degeneration in the brain (hand raised).
*He then tested my legs, and found that my ankles had no deep tendon reflexes and one knee is very diminished, one partially diminished deep tendon reflexes. This took 10-15 minutes. I asked him WHY he did that. He said he wasn’t a movement specialist neurologist and just dealt with seizures. (????? We think he was checking to see if I was lying).
*He emphasized again the addictive nature of diazepam and Ativan using the exact same phrases as my GP.
*He said he would take an MRI and by looking at it would determine if I have epilepsy or pseudo-seizures (he is looking for deep scarring, which is what happens during Grand Mals over years, but may not show up over the few months I have had them; much as MS spinal demyelinization doesn’t show up for 6 to 9 months – or even 2 years).
*I asked him how I was to improve my quality of life, which is pretty poor in the four months while I wait for the MRI he wants. He had no comment.
*He also believes that I have pseudo-seizures due to the description of my absence seizures.
However, as we pointed out, I had TIA’s regularly BEFORE having a partial stroke and then later seizures. I still have TIA’s. I also have muscle seizures due to muscle and nerve death due to my disease. My disease also has a component of Parkinson’s (is related to), which causes instances of Parkinson’s Fog. We admitted we did not know which were seizures and which were “Fog” and hoped he would help us.
*Only if he sees what he wants on the MRI will he initiate any treatment at all.
In summary, we are now going to write a letter to have Cool Aide replace our GP since we have heard our GP’s sentences coming out of three specialist’s mouths. He has delayed referral to a pain specialist for months until I came so he could tell me his opinion of me. He has not initiated treatment for ANY of the illnesses found by tests, nor will he even do follow up tests for existing illnesses (like progressive anemia). He has not in the 9 months or so, initiated a single medical treatment, or independent referral and though asked for I currently do not have: a motor neurologist, an endocrinologist, and a respirologist (sic) for starters, even though he has signed a note saying I need a continuous oxygen concentrator.
Then we will have to start entirely from scratch. Only now, I am currently too exhausted and have been since June to make it to GP appointments and Linda as medical power of attorney goes in my stead.
“Pseudo-Seizures” are a point of debate because every year, more actually named seizures are found and taken off the list of the “Pseudo” – it just means that when the seizure is occurring it is not showing on the EEG machine. Or showing a typical seizure activity. However many specialists feel that it is just another form of seizure that is deep in the brain and thus cannot be read by current instruments. However they feel, people with “Pseudo-Seizures” have a pretty bleak future as there is no medication which treats them, most people with epilepsy are accused of having 30% of their seizures fall into this bracket; so no way to stop them, no treatment and you get a “Pseudo” label to boot. It is however easy for a lazy neurology to instead of investigating the various types of seizures a patient has or even asking, to simply label, as this one did it into two group: Epilepsy (2500 types), Epilepsy with Pseudo and/or Pseudo. Since Pseudo is “not my inch” for seizure specialists, that means they get turfed and after their one visit (or maybe a follow up, it is “good luck” and goodbye.
Cheryl has pointed out that not using Ativan at home only means that I will be more likely to have longer and more violent cycles of seizures at which point the EMTS will take me to the hospital at which point I will be given a main line of Ativan. They will also give me a limited prescription and advise me to take them during an “aura” (what you get before a seizure – for me, smell of burning rubber, blue sparkles or “something is wrong”). So a diminished quality of life, and more time in recovery from the hospital (and $86 for ambulance).
The question is, do I believe the ER neurologist who SAW me have a seizure, and who I asked if it was a Pseudo and said NO? Do I believe the EMT and ER senior doctor who saw me have a series of three to four seizures and who I asked directly what it was, and was it “Pseudo” and he said “No, it was Atypical” (meaning a seizure that is not a simple tonic-clonic and recommended Lyrica instead of the traditional drug until the exact seizure was found, along with Ativan and the Diazepam.)? Do I believe Cheryl who has seen several hundred or thousands of people with seizures in her decade plus of EMT work? Do I believe the progression of my disease which indicates that seizures at this point due to several reason (I can discuss them later)?
Or do I believe a man who has NOT seen me in a seizure, who did not ask me more than two questions but did have a long talk with my GP about “what type of person I am” and tested my knees and feet?
The following is the description Cheryl wrote up for the Seizure Neurological specialist, those who have some experience may find it of interest. As for me, I am seeing my quality of life, which is pretty poor due to reduced memory among other issues, going down for the near and far future. At no point did the Neurologist take any of my diseases into consideration. Thank you all for your best wishes. But right now I am three for three.
My name is Cheryl Gilson. I have witnessed Elizabeth McClung having seizures on numerous occasions. I have over 10 years experience in Emergency Medical Services as an EMT and First Responder. I also grew up with cousins who are epileptic. I am familiar with seizure disorders and a number of types of seizures.
Elizabeth and Linda asked me to provide this document because I have witnessed so many of Elizabeth’s seizures. I see her nearly every weekend so I have seen numerous seizures. I am just going to describe the seizures I have witnessed in general, as well as two specific recent episodes. I hope this report provides you with needed information.
The majority of the seizures I have witnessed are absence seizures. Elizabeth will suddenly stop speaking or reacting to her environment. It is as if someone has hit a pause button. She stares blankly and her mouth often either opens and closes rhythmically or she chews at her lip. When she becomes aware again, she is unaware of having had a seizure.
I have witnessed partial seizures where there is clonic-tonic movement of one limb (usually the right arm or right leg) in association with an altered level of consciousness.
I have witnessed what would seem to be a tonic seizure where the muscles become rigid, the back is arched, I hear a stridor breathing pattern and sometimes Elizabeth screams.
I am going to describe two recent episodes I witnessed.
Two weeks ago while staying the weekend at my residence Elizabeth had a series of seizures when she first went to bed. The series began with an absence seizure where Elizabeth simply stared and did not respond when touched or spoken to. That state lasted approximately 30 seconds. Then her eyes closed and she moved into a tonic state. Her muscles contracted and she was arched off the bed. When I touched her, the muscles were rigid. That state also lasted approximately 30 seconds. Elizabeth was completely unresponsive during this period and during the following period. After the tonic state Elizabeth’s muscles all relaxed and then she began convulsing. Her muscles were rapidly constricting and relaxing causing the jerking associated with clonic-tonic or grand mal seizures. This lasted close to two minutes. After the convulsions stopped Elizabeth was unresponsive for a number of minutes. Then she became responsive although she spoke of being extremely tired and wanting to sleep so we let her sleep. It appeared to be a post tictal state.
This past weekend I stayed with Elizabeth and her partner Linda. While speaking to Elizabeth she lost consciousness. She came around a few minutes later and it appeared that she had experienced a TIA. (She has had TIAs before and I believe the Emergency Room Physician at Jubilee also diagnosed a mild stroke at one point.)
Elizabeth asked what had happened and as I was explaining she said “I feel funny” and then went into a tonic state with her muscles rigid and her back arched. Her partner and I moved her to a prone position at which point she began convulsing. The tonic-clonic state (or grand mal) lasted approximately 2 minutes. Once the convulsions ended, Elizabeth slowly became responsive to us again but was very tired.
In the case of all the worst seizures I have witnessed (Grand Mal or complex partial seizures) Elizabeth usually has an aura. There seem to be three different types of aura’s as articulated by Elizabeth. She has spoken of smelling/tasting burning rubber/plastic. She has spoken of seeing blue sparkles. She often just starts saying “Something is happening. Something is wrong. I feel funny”. The last one I attribute to her having a sense of foreboding.
I am of course, not a neurologist but what I have witnessed is the same as the seizures I have dealt with as an EMT. They seem to primarily be triggered by overheating and being extremely tired. It appears that on days where her body has been under the most stress she experiences the most seizures.
Monday, October 20, 2008
Life is for the living. I tried to get outside today. I didn’t but I will try again. Yes, sometimes I wish I was dead, but I’ve NEVER wished that Linda die simply because I do. That’s because I am not a narcissist, like our culture seems to be. When my Grandfather died, my Grandmother got lovers; admittedly having already MARRIED lovers in a care home doesn’t go down well on visiting day.
If I love Linda, I want her to continue: to live a full life, to love again, to meet someone she wants to spend the rest of her life with. I hope she waits until I am a bunch of ashes in a box first, that’s all. I want her to take trips, to have fun, to laugh without restraint. Heck, I want to do that now, it just doesn’t seem that with the stresses on us, to be possible, but maybe worth fighting for.
I know a lot about not wanting to be alive, about wanting to be anywhere but HERE: this place, this existance. I know about depressions so severe the pain is so severe it is hard to breathe, the pain in the bones such that it is hard to know how the blood circulates. Styron wrote that he slept on his left side in hoping of tiring his heart of beating. I know that, I knew that for years, decades. I still contend that my greatest victories were accomplished in the hours I sat sit, and did….nothing. I did not get a rope to hang myself, I did not get a butchers knife, I did not throw myself down the stairs, I did not throw myself in front of a train (though I was caught once by a student of mine climbing over the railing to do just that). No, I sat there, and I survived, even if it meant gripping the chair. Mostly because of Linda. If they want to make a song, they should make a song about staying here for someone, because that is what happened. I stayed, and tried, and tried and did different meds and came out and one day, one month, I had more days I wanted to be alive than dead.
I didn’t make that happen, some people will suffer from depression that is an illness I would not wish on anyone, for their whole life. I got lucky.
Right now I have 12 deep bleeder cuts on my right inside arm, five on the outside, two on the bicep, and six on the left arm, three or four on the collarbone (non-bleeders) and three on the jugular (non-bleeders). And I don’t remember why they are there (they are over a day old). Obviously I must have believed I was a bad person, a very bad person. I did it with scissors apparently which amazes me because as AB, I never could get enough force to cut with scissors, but a couple of these are quite deep, on a person with minimal circulation. But because of the Seizure, which may or may not be connected emotionally, I can’t remember. But I know I was in a dark place. I’m not going to take pictures of the cuts because this isn’t a contest and cutters sometimes get “triggered” by pictures. I don’t hide them, because this is a part of whole I am. But I suppose it is rather sad. Still, I consider myself lucky.
I am lucky because I know what it feels like to want to live, to be alive, to be fully in the moment, to be happy without regret. I have done things that made people happy and seen the happiness on their face. I have used my ‘powers’ across five or six languages and a couple continents and had experiences of genuine contentment. And I have shared these with Linda. Whatever is happening now, or this week or season doesn’t take that away, as long as I have one memory of it.
Does it make me sad that I am under such stress or unhappiness that I returned to cutting, to wanting to destroy myself so bad I CLAW at myself? Yes. But while that is a part of who I am, and will likely a part in the future, it will not be the majority of who I am.
I have met Cheryl, who I wish I had met years ago, but I didn’t and so the time we have is now. And much of it, I can tell by picture, I can’t remember. But that doesn’t take away from what I have. THIS is living. This also happens to be dying, which is why I can’t remember. It is also why I don’t need to believe in miracles. I was thirsty and you gave me drink: I have people in my life, people who I have never met who have taken parts of themselves and given them to me. I have cards, and postcards, and I have someone who takes off work to watch over me, someone who didn’t know who I was until maybe a year ago. And I have a partner who has had to take over responsibilities no one should have to: being a protector, being a caregiver as well as a partner and trying to keep all the roles straight. And trying every day to do better…..for me. Is there a great gift than that?
I know that whatever happens, that three things are sure. 1) I will definitely annoy someone in authority. 2) I have at least two people’s hands I trust to hold, and who will, by simply by being there, make it the one safe place in the world for me. 3) That I am a better person because of the people I have met and corresponded with online. If there had been no people to trust me, I would not have gotten the idea for the postcard project. If two specific people had not spontaneously sent me packages to cheer me up, I would not have thought to sent packages to make other people happy. If a specific doctor had not written to tell me to kick butt when it seemed I was all alone against the medico’s, I would not have realized that I am not alone. I am become a better person, a more aware person, hopefully a caring person, but also a challenged person because of number three – the people online. You make me more. Whether it is someone riding a bike while I do a 10K, or someone who didn’t leave me when the strip left me, or the people who have sent me pictures to cheer me up. It challenges me. I am here, I am, on some nights, carried back to the computer after seizures because I refuse to go to bed until I have fulfilled my promise to my friends.
As for number two, I could extol Cheryl’s virtues: she has an unending ability for turning a sexual innuendo, she can totally perv out and um, “enjoy” the sights of nature, as well as those created in animation! She probably has the hots for Betty from the Flintstones. Oh wait, those are only virtues to me. For me there is only one thing that I can say about Cheryl; that in all conditions, in all circumstances, she did not leave. She was there, and she cares. And I would die happy if I could see her in a corset (Zing!).
When I was a youth in the UK, I saw this 10 year old boy on a fallen tree above the brambles; “Jump” I told him, to come over to my fallen log, “I’ll catch you.” He jumped. He didn’t jump directly into my arms, so I grabbed him, held him to my chest as I fell off the log with my back to the ground. The brambles torn into my back and arms until I hit ground, but the boy was safe. He bounced up and bounded away.
In my life, if I commit, I will be there. I have found it…less so with others. I do not trust others. Or rather, I trust one thing about others; they fail.
Cheryl told me she would catch me. She did. I don’t know what the cost has been to her but I know it costs her, physically, financially and otherwise. I don’t ask because how can I second guess the choice she made; which was to keep her word. That’s Cheryl. She came for me (And I believe if you had come, back then, you would have fought and I would be a different person, because I would have fought too).
Linda, well, I suppose you could say that Linda is religion. You can believe in what you want, but Linda does it. No, she is not perfect. But she loves, and loves and even when she gets mad, she comes back and loves again. She heals the wounded, she tends the broken hearted, she gives sight to the blind, she frees the prisoner, being there for every nightmare and she has proclaimed the liberty, the freedom of the captive. I did not know how empty was my soul until you filled it. Because of you, Linda, I not only relearned what "wonder" was at seeing the world, I learned to share it. The rest is just how it plays out in life. Sometimes up, sometimes down, but as long as you are there, I WILL eventually sleep well, I will be at peace.
And authorities: I have a hatred for two things, bullies and hypocrites and believe me, men might be loud about it but women are experts at it. And women in positions of authority, where the most vulnerable can be found there will also be bullies and hypocrites. If you get paid to care, and you don’t, then I will expose you; and you will punish me. And I will expose you again. Certainly there are guys who do this, but since I am out of sports mostly and into “healthcare” it is a predominately female driven group. And if I can’t get at least a few people fired and one put in jail before I shuffle this mortal coil, then I’m just not trying hard enough. Haha. I laugh becuase I will not cry at a culture that doesn't want to see that someone who puts their vanity of authority ahead of care while preying on the weakest and most vulnerable members of society; they are the lowest parasites amoung us. I would that their name become synonymous with mistreatment, that they get nothing but an anonymous cleaning job the rest of their lives. Because ANYONE entrusted with care of people who are unable to protect themselves and who abuse them, be it verbally, emotionally, physically, or all of them has broken a sacred tenet. And while the Furies may be on retirement, I am not.
So, the end of the matter is this. Life is living. Yes, it sucks, it cuts you like a blade. It leaves you alone, it leaves you aching, it has times where you cry and don’t even know the name of the emotion which leaves you in that state. But if you have a memory of a blue sky, or a cat pouncing, or some private joy, then it can happen again. It took me over 20 years to find one person, and another 10 to find another. Yet, I AM lucky. And all the pain and seizures, and ripped muscles or loss of function or drooling or heart stopping can’t take that away. So Linda, don’t die with me, just TRY not to sleep with a lot of married women, okay?