Monday, March 30, 2009

Sara is dead. Facing death: I look, instead of passing by.

Sara from Moving Right Along is dead. The email to tell me she was in decline had been bounced Friday and come today; I didn’t read them, Linda did. When I had my diagnosis and was flapping around with the newbie panic of ‘OMG! I have a terminal disease!” she was one of the two people who wrote me to share her story, and that a diagnosis, that conventional medicine of what should make a person dead doesn’t mean they still aren’t making bread for fun years later.
Between us, and the advise of a salesperson in Sidney, Sara grew a prosthetic leg from the ‘leave it in water and watch it grow” Halloween legs. Halloween: when society openly tells everyone that WE are the nightmares. She sucked me into NamBloPro (still sounds like some porn star contest) and I ended up blogging daily over a year. I kept sending her postcards and before Xmas she emailed that she was watching TV, resting and feeling crap. We had suspected that after she didn’t mention the 13 mm tumor being removed that tumors were everywhere. So we guessed that as historically against Chemo, that she was taking what pleasure from life when and while she could. I don’t know. I hope she got my last postcard a few weeks ago and smiled.

Eric, her partner does NOT want emails or phone calls: he is grieving. And to have one of the two people who said, “Life goes on, even against death…” now dead, it shook me. I cried for Sara, and I cried for the loss of a dream that with enough attitude, or baring your teeth, that somehow death is overcome.

I was taking a bed day and a few minutes before the news I was having problems drifting in and out of consciousness. And when I saw the green and the circles, and then I woke, lifted my head from the pillow and tried to find my manga. I thought, ‘this is how they will find me one day....maybe today, just slumped over and that will be all.’ Linda who found me fading in and out, and called me back to consciousness a few times, later confided she thought that also.

It still hit me. Sara gone? Here I was crying because of Sara and Death. But I didn't fear death? Well the one which is living and dying, which simply is; the other is the emotion and the grief that goes with it.

I am in the end stages of autonomic failure, and how long that takes could be a day, it could be a month, it could be longer. I just keep going. Sara had been doing what Linda, today, said to me she was happy to see me doing: reading manga and watching TV – doing things that give warm feelings and pleasure. Taking in quality of life. This is what Linda felt I should be doing more.

I have been writing with different friends about how I am not the same person I was a year or two ago. And this is not the same blog it was a year ago. I am not quite as funny, not near as active, not an activist, my fights are personal, against my body, against my limitations. I am not as clever, nor do I have the memory. Those who have decided to remain friends I am thankful for because if I was in an equal relationship I am self absorbed, selfish, and not all that interesting. I ask Linda why she puts up with it as she isn't getting as much out of this relationship as she puts in! She just looks at me funny and says, "but you would do the same for me." So I'm selfish (I am a bit)....OR I am dying, I have finite boundries, extreme pain, severe limitations and failing systems and I am trying to strive to become more than just that. But you know what they call someone with cancer who strives, pushes themselves, and achieves what no one else in that stage of cancer has done before? They call them: a cancer patient.

Once out of the world of able bodied understanding, of signs of excellence no one knows what cost it takes to act, to send out a letter to a friend, to support emotionally someone. We press on through the tangles of expectations of the able bodied world, where “accommodation” is where an able bodied person is a bit more patient with you because you are ill….until they become impatient and then, well, that excuse isn’t going to cut it anymore. They can’t know what it is like to try to write emails or do complex tasks everyday with the equivalent of a severe flu AND weights on all limbs AND pain that screams in your mind all the time so much that you have say, “I’m sorry, can you repeat that.” And the person gives the “Oh geez, why don’t they just TRY!” sigh and repeats with emphasis.

Dying has made me wiser, but a very steep learning curve. All I learn about my own foolish preconceptions I try write for the blog. I am sure if I did it again, I would die better. But no one has the time to hang around in this purgatory, which is it, pain and a middle zone of fear, of hoping each day is the same and maybe one better and knowing that it WILL get worse. Well except maybe Lene, which is why she is hired to speak for those who haven’t the words. That she is still sane is a credit to her determination, and a blessing to those like me, who fade in and out of sanity at times. I, will of course spend my days, as many as I have both taking the time to find what enjoyment or pleasure there is, from manga, squirrels and other wildlife, to sitting with Linda.

But in the end, no matter how I get dressed, no matter how pretty I look or clever I write, this is who I am: a person who last night didn’t know what “Four” meant. I am a person who has one to two grand mals a day, a person who burns, literally, as my body cooks my organs, my heart so erratic that the majority of beats are a mix of the four of five erratic. This is me. This will be me until the minute I die. You can dress me up but I will always be fighting, what, the immune system in my head, the Lichen (yeah, the stuff that grows on rocks) which is turning my vagina to liquid, the lungs that don’t work, the sweat glands that don’t work, and yet I live on.

Sara’s death asked me how I want to be remembered, because people often don’t take the time when you are alive and still fighting to do tasks to have a eulogy, that is saved until you are a tin of ashes. I hope I am remembered as a person who while overly determined to go against the perceptions of convention, the greatest of these is that I am not the disease. I am not the disease. I am the person who sends out postcards, I am the person who sends out letters, and pictures, and packages to people. I am the person who sends out emails. This disease robs me one at a time of my ability and strength to continue as this, and the time I need to recover. Or as Linda says, “you give until you are empty and then you keep giving, even when no one supports you.” So, sometimes I collapse, or go a little loopy. Sometimes I take a bed day. But to give, to care, to reach out, to live I Cor 13. To prove in this day and age that love wins. In a society where love gets no value, no priority, I want people to know that though I failed everyday, I loved, and I loved those never seen, and received the love of those unseen gratefully. Love Wins! Love is the victory of the ill, the disabled, the chronic conditions, those who have no voice except their own, and no community but the one they create.

I Cor 13

Though I had the gift and understanding of all obscure things and all mysteries or the power to level mountains because I had love, I had nothing.

Though I give riches away, and give my life for causes, because I had no love, it meant nothing.

Love suffers longs yet is kind. Envies not.

Love does not behave with disregard, or seek personal agendas.

Love does not rejoice in injustice but in truth.

They bear all things, they believe all things, they hope for all things, they ENDURE all things.

Where there be ‘secret truths’ they fail, where there is only knowledge it fails, or special people or powers, they fail. Love never fails.


There are far less people reading than a year ago. Some didn’t see disability, disease and what I learn living it as relevant or interesting. Some just left for other reasons. Some died. I am sorry for those who left because while I have spent 14 years in post high school education, I never LEARNED like I did in the last two years. And while I am dying, in fact I am death, I am also so many other things, and if you can only see the mask on death and disease on me, then you miss everything else.I hope like Sara I will be: a friend, a fragile individual, a fighter, and someone who tries in her own way to keep caring. Death will come, and they will find me slumped over. But not I hope because I didn’t believe that that which is truly eternal is no longer relevant in the 21st century, or in any time, on any continent.

Exit stage right.

Saturday, March 28, 2009

Under construction, art books, baby monitor

I am currently under construction, please bear with me during this process, I expect to be done soon.It IS my intention to send out postcards this weekend. It is a little late for suggestions on how not to go insane but if you have any ideas on going on, please let me or Linda know. The book sale went very poorly (paid for rental of table and enough for a medication, period, time spent in sorting and pricing….$1 an hour), the ebay sale is going average to poor.

I got manga this week from two people, thank you. I really appreciated it. I read one today, and it was good. It made me feel good inside. Thank you.

Please be patient during this slight lull, and I will be back to amuse soon.
Any contribution towards art books are appreciated. The art is for the blog. I use licensed art materials. I try to find original artists and source them. Today I received some book including the ‘best 100 pictures’ of the last seven years of megami magazine. It appears that the voters were virgin males who are obsessed with boobies and girls bathing. This was disappointing. Another book I had waited 3 week for only to be told it was out of print. Linda then authorized me to get it from a very small US seller who has it out of his garage at a higher price. The book in the three weeks had gone out of print everywhere in Japan and the US and was listed as a ‘must have’ by three of the people whose lists have been good before. The two pictures I researched were very good with ‘some breast shots’ – apparently ‘some’ is a word for 60%. This was a great disappointment. I hope to sell it to the type of virgin people who told me it is a must have after taking the 25% of usable pictures for the blog.

For now, I use Akadot (gift certificates here), which, associated with DMP, has direct ties to Japan. Also Be Nippon where new books can be bought, but the shipping is high and they come dinged from the shipping getting dropped. One person had gotten me a gift card. I appreciate that. I have researched each book for about 10-15 hours in attempts to find the best art for the blog with the greatest diversity. The gift card allowed me to get lollipop 2 (which was the last copy they had, very out of print in Japan and US), and Coloured Ice (another last copy). Both books were used in the last post (on Who were you?) and others over the last month, both from artists who started from scratch, working their way up.

I like finding a good art book. I like to use the art in the blog. It is the closest to happiness I know except the feeling I get in the chest sometimes when reading manga. Someone sent a romance to Linda from her list. Thank you, it is important. If you know of the baby monitor listed used somewhere please let us know. Linda is working on work hours now. When I stay up to finish a blog, there is no way for me to call her to move me to the wheelchair. This monitor would allow me to turn it on and then let her know I needed help. Also in case of oxygen or seizure. We have bid on ebay but they go higher than we have funds.

We work onward. Nine days until nothing changes, nine days until Booth Gardner, nine days until everything changes.

Thursday, March 26, 2009

Which one/s were you? Age 2-10

Maybe it is people moving and finding photos, or the fact that I myself am regressing, and Linda and I talk about the mentality of ‘that age’, the childhood age. But I’m doing a couple of ‘Which ones were you?” blogs with pictures. Don’t worry, I will tell all first, so any stories have plenty of company. I also find it wonderful and fascinating because we often as adults don’t talk about our favorite plushie, yet these are the times when emotions were very strong, when time moved very oddly; vacation was LONG time away, school days were long, playing time was short and fast: Childhood.

Linda also has a post today on a Girl’s Gotta Fly if you want to go over there to take a look. Thanks to all the individuals who have reached out in the last several weeks as this has been an especially brutal month for me in both healthwise and emotionally. I am thankful for every single card and letter, and every kindness during this period where now I have several hate mail, or emails a day. This has been a difficult month for a lot of people. I also want to thank those who helped with their commitment and contribution to the Postcard Project which isn’t really my project but the project of many people, who all assist me in a dream, which at times becomes harder to believe in.

On to the pictures, and the stories! I will be mixing pre-school and the first school years here; the time when ‘best friends’ sometimes changed every week, but sometimes lasted for a couple years. The time when you played alone or with others, or were the one organizing the games and bossing people around. The time you had practice and sports, sometimes your choice and sometimes not as you got from piano lessons to karate.

So, I’m going to start with me (which will be spread over several pictures, as I assume it will be with you), which is here. I was both a bit of a loner, but I also had a rather vivid imagination. I didn’t have imaginary friends, I had imaginary worlds! As you can see, here the adventure is over….for now. The poor dog (and my poor dog) has about reached his limit at being….er…the crucial dog to get messages through? And the galactic war will have to wait for another day. We had a dog and a large back yard so whether it was gong on a expedition (putting up a tent….only to find slugs in my shoes when I came out – ahhhhhhh!), or creating my own fish pond, with a wading pool and then going fishing (they were bathtub wind up fish), there was always something going on.

Here is what I was not, even though we had a lot of trees: a tree climber. There seem to be the tree climbers and the non-tree climbers and those who liked to climb trees either have a) a story about a broken limb or b) a favorite branch they liked to hang out on, it was a second home to them. Or sometimes they have both. Though we had several trees, including two very large cherry trees, I was NOT a tree climber, in fact, I had issues with the top rungs of a ladder. But I always liked the idea of being like the squirrels and climbing trees and going from branch to branch. I did TRY, it is just I found out that for example tree branches have SAP. And it gets on your hands, and your clothes and is sticky and dirty! Oddly tree climbers never found this the obstacle I did.

Okay here we have, um, well me, I guess. Plushie, check, tea party, check, flower, check! Although I tended to bring MORE plushies than this (my first bear was green, and lost at the age of 2, on the ferry, I cried a LOT – like hours). When it was winter, you could make a tent out of your bed with the sheets and have a tea party indoors. My favorite plushie was a pink bunny, it was dark pink with a light pink belly and I would put the pen in its paws (I could write quite young, at 3 or so), and write simple love notes. I love you Daddy from Rabbit. That was the bunny’s name: Rabbit. No, not Peter or Flopsy, or Cottontail: Rabbit. I know that there are those who probably looked for BUGS while outdoors instead of flowers and four leaf clovers. Like I will say, everyone is different, and that’s a good thing. I once hit a butterfly with a rake and then cried and got a small box and had a funeral. I think after that my parents did a lot of yard work by themselves as they could envision this quite large graveyard of every moth, butterfly and other animal killed in our backyard.

Okay, here they are, the girls who took music lessons (I wish I had a picture for the girls who took ballet lessons and tap but you can throw yourselves in here too!). A lot of girls got ballet or music lessons from VERY early ages like 2 or 3. Now I hear of girls getting karate or judo lessons from the same age. But the tradition was music (piano!) and ballet. I did not get those, probably because we lived in a rural area and didn’t have a Y or a rec center that I can remember, which is why I had to learn how to swim at 11-12. But there were a lot of them, and I am always curious how many, after taking piano from 3-14 can play piano now? I mean, I learned French for a total of a week and I can still sing Frère Jacques but I think everyone can. So that hardly counts. I can’t imagine picking a saxophone for a child, but perhaps the girl wanted it, we become enamoured with unusual things for unusual reasons. Either way, um, that would have been some ‘interesting’ practice sessions in that house. I have seen 1/8 size double basses for children, it is just I can’t imagine a 5 or 6 year old going, “Mummy, Daddy, I HAVE to play the double bass…..” Which is probably why there are a lot of people who can play piano and not that many the contrabassoon and double bass.

Helping Cooking: not me! But it is a great picture. Linda talks about making little pies from the left over dough her mother rolled. And while I rolled dough at my grandmothers and made sugar cookies the idea of making a tiny apple pie as a child sort of blows me away. But she was on a farm and her mother cooked in an open kitchen so I guess that is what she saw, she still sort of pulls recipies out of her memory from something her mother made when she was 12. I tried making some food but of course went WAY over the top and wanted to make cherries Jubilee (I think it was the setting them on fire that appealed to me!) or soup from scratch. So by the time it was done and people were like, “This is edible” I decided I would live on take-out and instant food if this was the time to appreciation ratio. As an adult I came to enjoy cutting up veg and making sauces and mexican food in particular. But as a child, no. I am sure we have some young little kitchen hands who probably made dinner for their siblings but that wasn’t me (that’s why I had IMAGINARY tea parties – cause I couldn’t make tea.).

Here we have the childhood pet. Since pets teach responsibility, all kids seem to get them. Some people, some kids seems to bond early with animals and it stays with them their whole life. Since our dog ran around in our yard (and around, and around, and around…it was a little hyper), I didn’t have to walk it. I did walk my grandfather’s cat, which was the coolest cat I have ever known: tail cut off, taken as a favor to a witch and she walked with me all over the woods. But other people like to walk dogs, it becomes a sort of life routine. I would have a cat if I could, since I can’t walk a dog and a cat is better when you are a stay indoors person (notice how I avoided ‘shut in’). But I don’t have any great childhood memories, sorry.

Linda says this was her, the shy girl on the playground. Often it was me too. That may surprise people but I am essentially shy; it is just when I am not, I am bossy. Err… Anyway, the shy girl waits to be invited. Sadly this rarely happens so she doesn’t have a LOT of friends. Her smile says she WANTS to be a friend, but will you play with her? Shy girls also tend to be the kind who have tea parties by themselves with their stuffies on the lawn.

Speaking of Stuffies, and other objects, what did you HAVE to bring to school? Here is a girl who has to have her stuffie. I have no problem with that since I don’t think Linda and I have traveled anywhere without at least one bear – our stuffed bears have seen Asian, Japan, Venice, Munich, Berlin, Dublin, Belfast, Edinburgh, Amsterdam…… But when I was a child, there wasn’t really anything I needed except to be left to do my work. In fact, I was not a ‘recess’ or ‘you can go play in the back’ type of person. The boys were loud. They hogged the toys. And I would rather sit at my desk and do the work on the board for the other grades (we were in a small rural school so in first grade I just kept going around the chalk boards instead of taking recess – later, I played chess with the assistant principal – yup, that kid.). But I know several people who have had to sneak their favorite toy/shoes/GI Joe figure or whatever to school. We all carry our strength in different things.

Speaking of school and strength, we learned early there were two types of humans: Those the gym teacher approved of…..and the rest of us. I was in, ‘the rest of us’. This was sort of me, only I usually landed on my back or spine as we did front flips off the trampoline, I never could quite make it around. Same problem with cartwheels, I was a spoke off or something. So no, I was not naturally sporty, rather the opposite in fact. Only in adult hood when I found sports like running (the more you hurt, the better you do – this I could do!), or other sports where I could train myself did I do well. The OTHER type of girl was this, the sporty girl. Actually, I really like this picture because I call it the sporty femme girl. She is sporty and you can see has that natural athletics but she has her PINK runners, and her PINK thermos and her PINK lunch box. Which is all fine, I am just pointing out that she is probably a bit frilly or has a lot of Barbie at home to play with when she isn’t being sporty. And later in life she will complain that practicing passing the baton chips her nail polish. That is unlike THIS girl: also known as ‘the Tomboy.’ Now this girl often, oddly was also good at tree climbing. Imagine that! And to be quite honest either was very popular or was the type of person who was friends with shy girls. I don’t know why, it is just a pairing I often see. Plus it makes it easy to play house, no one has to fight over who is going to be mom and who is going to be dad; or who is going to be the doctor on the plushies and who will be the nurse to wrap them up. Tomboys are often either good at sports or just don’t care. Or WANT to do sports like ice hockey that they aren’t supposed to (Go and do your Ringette!), they want softball, they want stickball, they want tackle football if they can get it! So fess up, who had the Tomboy phase (hey, sometimes it lasts for a short time – I know a good friend, who was the BEST Tom Boy and would do anything until she came back one summer all frilled up and that was that. When you suggested climbing through bushes playing hide and seek, she pretended not to hear. It was all hair and nails and dresses.)

Here we have our Tomboy and more frilly girl pairing (Gee I wonder whose idea it was to go up on the roof like that?). Actually, since I lived in an urban environment, I didn’t climb trees but I did go over rooftops a lot, and my hideout was in a nook of a rooftop. But let’s see, blouse (white) and dress versus waders and t-shirt. Actually it could be the girl in the dress, since often Tomboys were shamelessly used to get access to thing we WANTED to do, or places we wanted to go (or sneak into) but didn’t have the courage to try ourselves. At least that is how it was for me. It is always easier with two….and more fun!

Now this is something where Linda and Cheryl get all misty eyed and I get all ‘Wha?” It is not the flowers, it is the clothes. She is in clothes her mother made. This is the experience of Linda and Cheryl and I think a lot of young children. I do know that I had something made of drapes at one point. But in a rural area, going to school in mom’s made clothes is pretty standard, unless you had hand-me down’s. Which depending how poor you were, could have been your brothers. UG. Well, I suppose better than Winston Churchill who wore pinafores until 6 or 7 I think, that has to sort of haunt you, press wise when you a prominent war leader! It looks like her bag was made from the same material as her coat. The sad news is that when it comes to sewing some moms got it and some don’t – so you can look back at your early pictures with a wince or well, it is almost always with a wince isn’t it, except when you are going, “That’s me? When was I blonde?”

Now, any young sketchers and artists out there? I admit I drew what I THOUGHT was great art. But suddenly I realized in grade two, when given the assignment to draw a bicycle, that I was NOT an artist. As I knew exactly what a bicycle looked like and yet I couldn’t make it come out on the page. This not only frustrated me to tears but convinced me that art and I were to part ways forever! However, I know there are many people who are very good artists because some of the readers have sent me their art, and it is good! So I am curious at what age people made their first art book. Or drew their first comic?

Now this, the reader, is ME. I mean, I was the child who was put to sleep with my father reading the Iliad and the works of Hercules and I read Sherlock Holmes as a child (and Encyclopedia Brown, Nancy Drew, Hardy Boys, The Three Investigators, Half Magic, The Thinking Brain and a few other classics including the entire works of the writer of the Black Stallion). My parents used to force me to get one non-fiction book for each fiction one. Well that was when ‘choose your own adventures’ where coming out, and so I had to get a great big old biography for THAT? Then as I started getting out 20-35 books at a time, it was TWO non-fiction books to each fiction one. I tried reading under the covers but my bed squeaked too much or my breathing was off, all I know is my parents could tell when I was NOT asleep. So I improvised, much like ancient Egyptians. My parents watched TV, and they would close the door but leave a few inches open, and then I could, by leaning out from the end of the bed, use the sliver of light, to read, by moving the book back and forth. The nights they left a decent 6 inch sliver of light were GOOD nights (I wanted a book where the text glowed in the dark!). My parents would lock me out of the house to try and get some sun on me…..and I would go with books in hand, and lie down on the grass and read. I can’t remember how many car trips I heard this, “Aren’t you ever going to put that book down and look around! Here were are at (insert great natural wonder like Yellowstone) and all you do is have a head down in a book!” Yup, that was me, the one who fantasized as a child about being locked overnight in the library and how great that would be. I was the one who set up a “library” at home and tried to convince sibling/parents to ‘borrow’ books so I could stamp them and then give them a library card. I was the geek in book geek.

Okay, here we go, another double. First we have the ‘best friends’ and these are the people who DID have best friends for several years. They had sleep-overs, they had birthdays together, they went to parks together, they were inseparable. And then whether it was going to different schools later or just different interest, she had to take piano lessons and you started doing science projects, or whatever, somehow it just drifted apart. The memories are all still good memories but no one really knows why some best friends just drift (of course, for some there is the ‘memorable moment’). Okay, now here is the rest of us, who had perhaps imaginary friends, or to make it more respectable, plushie friends and a strong imagination. We were always on adventures because we learned (from books like Encyclopedia Brown) that if you keep your eyes open you can see anything from a bank robbery in progress to playing Harriet the Spy. It was cool if you had a friend and could place a letter in a ‘secret drop’ and then pass letters back and forth that way until it became suddenly not as cool anymore (oddly I still think it is cool, why did I stop?).

This last girl is sort of painful to me because she is so often misunderstood. The gift giver. You see how happy she is, because she has probably worked a long time and hopes to see the anticipation or the joy of getting a gift on the person’s face. But you also notice that she is alone. There are people who are natural givers, that is just the way it seems to work out. Even today, when at work they need someone to bake cookies for a sale, well, while there might be 30 people in the office, there will always be the same six with a few joining them. The problem is that the gift giver WANTS friends, but their actions and thinking is very hard for people to understand. When I was a child I made a list, “Things people forget when they grow up!” And the first item was, “Children always love gifts.” When my father would occasionally bring a gift home from work, I can tell you hearing his footsteps up the driveway meant I was at the door. Was today gift day? And with each other, some children, many children like giving each other gifts. They don’t have to be fancy, they don’t have to be expensive, but often it is something precious to the person, or something they think the other person will like. Or like when they went to the Zoo and there was a place to buy wax pressings of animals, they would go up later and say, “I got you a monkey ‘cause you said once you liked monkeys!” The problem is that as children age, or change friends, they stop giving gifts or this person who comes up and gives gifts embarrasses them. Can’t she tell I want a gift from a BOY! Or, “Can’t she tell we were friends LAST month, when is she going to figure it out!” And as time goes on, people just become sort of more cynical, the idea of a person who likes or enjoys giving, is strange, is weird, there must be something wrong with them. If they are lucky, they find someone who they can give presents to for the rest of their life. Then at least ONE person understands.

Okay, I can’t finish without siblings. So first we have the younger sibling. This is pretty much a common scene. We have the older sibling (who is idolized by the younger sibling) granting some time to be with the younger sibling. However, you notice the younger sibling is playing a game (walk on the line!) and probably going on and on about people the older sibling has never heard about since it has been like 3 weeks since they listened and all the names have changed since thea (That was point 2: what is important to a child is just as important to them as what is ‘important’ when adults tell you ‘That’s cute’ or ‘that’s nice, but we have to talk about IMPORTANT things. But it IS important if Jenny took my favorite pencil and no buying another pencil won’t make it the same pencil and how do I get the pencil BACK?) Older sibling here has brought book and is either lost or busy reading. Now here we have two sisters, and Linda as a younger sister assures me that this younger sister is a troublemaker. She is the person whose favorite line is “That’s not fair” – how come she get to…….." Which is why she gets to go with older sister. Also makes older sister hate her, and get back at her during next ‘babysitting’ (“I’m too old to need a babysitter!”). It is the nature of siblings to want the attention of the older sibling, but also have a weird hate relationship too. So, will the younger sibling ‘stay close’ because older sibling tells her to, or will younger sibling say, “I don’t have to do what you say, you aren’t mom and dad!” and run off? Or is younger sibling here to find out about older siblings’ friends who she then wants as HER friends. Either way, when I was 18, I finally figured out I did not need to win EVERY award plus one that my sibling had; I could (gasp) simply choose to do what I LIKED.

And here we finish with The Princess a.k.a. the Blackmailer, a.k.a. The Girl who HAD to be in charge. Often it was the siblings, and some younger brother is off getting her a drink due to some leverage she has over him. But sometimes they were single kids or just kids at school, but I have seen that smirk of, “Oh yes, bow to me!” WAY too many times. I know kids went through that phase, and I know they are out there, they can’t ALL have ended up as prison guards! So what was the deal? Why the need to prove that you were the person who decided what game we played? Which oddly was you as Queen, and the rest of us as peasants all having to bow as you passed by. Please, if this was you, I have always been curious, why?

So, where are you in these pictures (or if you are a guy, translate into ‘guy’ and please share your stories too!)? And what is your story? What did you HAVE to bring to school? Where you a tomboy, good at sports or like the rest of us, scum in the eyes of the gym teacher? Did you have four years of tap dance? Did gymnastics until 15? Was a Tomboy until you noticed BOYS and that they kind of liked the girls who didn’t have scratches all over them from sliding home! Were you the bookworm (did kids as school call you 'worm' too?!)? What is the story these pictures jog, and please share it with us!

Tuesday, March 24, 2009

My shotgun wedding: no going back

So how and when did I get into a shotgun wedding? Well, it sort of just crept up on me, and before I knew it there were official people standing there going: Elizabeth, here she is. And they get us together and I am told to not feel nervous and then that is it – we are wed, or in some sort of common law marriage, and people are telling me that since we will living together every waking hour, I should get intimate with her.Wha? No, I don’t want to lie down on her, I prefer to do that in the intimacy of my personal room, thanks!

While this may seem a bit odd but it is an experience that most people with limitations and disabilities have. There is no vow, but there are official people (your OT, a PT, a Doctor) who say, “Jane, this is your (insert assistive device here)” And thus you are wed. You name it. You take it everywhere; you curse it, you baby it, you have mixed feelings and sometimes, after a while you love it (or you hate it, end up getting divorced and are seen about town with a new, younger model with people going, “Talk about a midlife crisis”). Cheryl says that it is more of an ‘arranged marriage’ as sometimes if you are lucky you get to see a picture or are shown several pictures and they never really show everything and then weeks/months later you are just left alone to find out all the little things they didn’t TELL you about (and the photo doesn’t tell you about either).

So I have a new Electric Wheelchair which I have so far name DT (that Damned Thing). While my manual titanium wheelchair if it had a name would be more like “Let’s fly!” And with the curbs around here, means me flying OUT of the wheelchair but still, we fly.

But this new wheelchair was a total shotgun marriage: I didn’t ask for her, I didn’t really want her, I tried to suggest to several others that they might like her instead; please “take her!” But the officials like the OT, PT, and Doctor ganged up on me and told me I need it. Yeah, need it. I haven’t quite integrated it into my identity yet.

But you know a lot of people have the same feeling the first time their doctor gives them a cane. They don’t want to admit that this is who they are, or where their body is at this moment in time (the classic is that they ‘forgot to bring it” which we all go, “yeah, yeah!”). So whether it is braces for EDS, or a wheelchair for M.E./CFS, or investing in a good bed and a portable chair for fibro, M.E./CFS, or yes, a cane for everything from arthritis to back pain, or a scooter instead of two canes, a seated walker, even an eyepatch: see, those kind of things are for OTHER people, not YOU! (please note, eyepatch does not come with thong, tattoo, opium den or minions!) See, YOU can do life without (insert assistive device name), because THOSE people, those who use them, just don’t want it bad enough, they are wimps. So whatever the device is, you go through the “Not me” crisis, and that is where I am. Maybe it is that I don’t want to come out of the closet (is there a rainbow badge for “I use my assistive device with pride”)? Whatever IT is, I seem to be going through what Dave Hindsburger went through when he snuck into work, not wanting them to know he had a wheelchair. He actually pulled this off for over two years, having to remain at his desk, until he had a reputation for being a bit of a non-participator (because he never went to the lunch room, his leg wouldn’t let him). Now he rides his electric wheelchair with nonchalant pride.

See, I have nothing against electric wheelchairs (oh God, is there where I start going on about how, “I have friends who are electric wheelchairs!”), but this wasn’t described to me as the ‘Speedmobile’ that I needed because I just wasn’t going fast enough. But as my ‘Final Chair’. Good, nothing depressing about that. It has added features like cheek and head controls as well as puff and sip all ready to be added on as well as a feeding tray and they said, ‘other devices already paid for.’ I don’t know about you, but I have a hard time getting exciting about a feeding tray for when I am too weak or confused to eat by myself (the dietician does NOT recommend a diet solely of ice cream). So no, I didn’t really want to admit that this was the wheelchair for me. I mean sure I didn’t actually leave the apartment anymore because I wasn’t sure I could get down the carpeting in the hall and back, or up the hill from the village, but that doesn’t mean I was ready for this, my ‘Final Chair.’ So some psychological adjustments are still being made. I’d rather they figure out a way to give me leg braces. I still walk a little, holding on to things, often it is more like a contained fall, in the morning when I have the energy. So being told, this is the wheelchair you will be spending 12+ hours a day in; this is the tilt and recline so you can keep the pressure sores from the parts of your body you can’t feel. Here you recline so you have your seizures in the chair and then can lie paralyzed for a time, This way I don’t break an arm or endanger my life while Linda is at work. Here is the webbing, like they use on parachutes to keep you from sliding out or arcing out of the wheelchair like I did during the fitting. It is a bundled package of everything that I know I shouldn’t be ashamed of but I am.
Yes, that’s right, the whole stupid ‘Will to power’ and ‘If you eat the right food and exercise’ from our society got to me. So I AM ashamed that I am so weak, I AM ashamed that I have seizures and drool, that I pass out. I am ashamed that by mid-afternoon, and by evening I need a head rest to support my head, that I need a upper body support to support my torso. That this is the wheelchair for someone who is helpless, in not just one, but many areas. It is hard to accept that being helpless, that being weak, that being unable to talk or use part of my face isn’t somehow my fault. That there isn’t some exercise or by trying harder I can’t stop this from happening. This is a wheelchair created for a degenerative condition and approved by Blue Cross in 2 years (normally five year) after my last wheelchair. They, nor does my Physical Therapist or Occupational Therapist believe that I am coming back. They believe, strongly; strong enough to get this wheelchair against my wishes, that this is what I need, and will need more as time goes by.

When someone tells you that and then rolls out a wheelchair that is pre-approved, it is hard for me to come up with a great name, and feel good about it. I think it is like recognizing that you need a cane, or braces; you may be 60 you may be 20 but you need a cane or braces. And eventually you recognize that this is PART of who you are; yes you are more than just the cane or the braces and buckles, but also that you will never go back to before. That there is no way back to ‘before.’

I’ve always tried to look my disability in the face and get ahead of it and yet this one, I didn’t want to look at. I imagine as time goes by I will love the chair for X, and Y and Z and hate it for B and C and D. It is an adaptive device, it is not me; but it is what I use now. This wheelchair is more than a mobility device; it is a safety and lifestyle enhancing device. This wheelchair has a flip up drink holder and wireless mouse tray. It is meant to give me a better quality of life than I could have without it. I am fortunate to have a Physical Therapist like Janet who fought for me when I wouldn’t fight for myself, who is making sure when she is in her new job, I will still be able to be Elizabeth F. McClung. I will be able to go, “What?” and wheel out from behind my desk, with my oxygen strapped on the chair and motor down to Monday Magazine and talk to them about the latest Victoria atrocity. As I can, on the whim of a spring day, wheel down to the store, or to the park, by myself, not needing any assistance and make it back without worry, even if I have a seizure along the way. A wheelchair and $1,000 cushion so that I will still be able to blog and use the computer to enhance my quality of life.

But, like any marriage, there are bumps and I haven’t quite reached the honeymoon part where I am in love with it. And then the part where I see all the flaws, and then the part where I know how to use it best, and try to live with and avoid the flaws. All of us who use assistive devices know about this. And while for me it is the Electric Wheelchair (still unnamed – maybe IT should be named INDY!), for you it may be an elbow or finger braces, learning to rest and sit down, learning to use the wheelchairs at malls due to your fatigue. Or it could be accepting that sometimes a little pill taken in the morning does make my mood better and more stable and isn’t something to be ashamed about (it does and I’m not!).

We all have or will face our moment where we have to admit or it is simply thrust upon us, this marriage to an assistive device. There have been canes and staffs as long as recorded history, wheelchairs from the 15th century, and braces for at least 150 to 200 years, probably more like several hundred. While prosthetic legs and arms of some kind for hundreds of years. Glasses for a few hundred, and medication for depression and such for several decades (it REALLY is far better than Electro-convulsive Therapy!! Or being soaked with wet and cold water to ‘balance your humours’ as it was from several hundred to only a few decades ago – or if you are here in Victoria/Vancouver, still going on!).

Why don’t I love INDY? Well, like some arranged marriages, I am a little bit bitter at the whole ‘arranged’ part. And the idea that they know better than I do what I need or will need. Arg! Just keep saying it Elizabeth, “There is no going back” and “There is nothing to be ashamed of” It is just I have been stripped of so much that makes me what I thought I was: I am Dr. McClung to no one, 14 years of education stripped away as soon as anyone sees the wheelchair; I am not an athlete, I am not an intellectual force to be reckoned with and I doubt they would believe I am an author and writer. Since apparently if this blog reduces to grunts, I become more “believable.” I learn that I am proud after all. But don’t worry, I will get over it, and then, who will stop ME? See, I will have a new force to run people over with, literally, in TANK mode.