If you hate Uke's, then you hate me: disgusting, stereotypical, submissive femme I am.

I have a disease called MSA-c variant AAN, which according to the Vanderbilt Study says on AVERAGE, I should have been dead several months ago. Okay.

Now, due to MSA I have nerve destruction in my whole body, I have organ destruction, heart destruction, and my entire autonomic system is dying just for starts. Yet I am still that female who worked up to five jobs simultaneously while doing my Ph.D. (one 37.5 hour one from Friday 5:00 pm to Sunday/Monday 4:00 am). I ran several times a week, I did 10Ks, I did marathons, I hiked over 1000 miles, I did rock climbing and I did fencing. I was fit, I was extremely powerful, and I was over six feet tall (and thus had men hitting on me ALL day long – some guys like women in charge! As in being picked up or spanked).

Okay, these days, I need a person who is strong, who is powerful and who can understand what is going on with me medically to take care of me. I need a person who even though I THINK I am independent, will ensure I am taken care of. This isn’t the adapted chivalry of today, this is the chivalry of 1930’s; I’d have to progress UP to be June Cleaver. See, I need a strong someone to help me on with my coat, and off again. I need someone to make sure that even if I THINK I am okay, they put their jacket around me (because otherwise I get frostbite). And yes, that is a picture of Gwen. I need a person who says, “Oh are you going down to the store? I have something I need to get, and I'll go just in case you need a hand.” And I say, with my little huff from down in my wheelchair that I don’t need a hand and I am very independent. And they say nothing but follow along and then when I get tired they get me a drink, and they get me the DVD’s down from the top shelf and they pay because I can’t talk without slurring or drooling, and then they do give me a hand to get back. Do you start to see? I like Uke’s and I like reading about people like Gwen because I WANT a place in this world, and right now, the only place I can find it, is in manga, in the Seme/Uke relationship. And that I see Gwen as a girl (as does Linda, and most people) works even better. And yeah, I probably have that 'little bit lost' look on my face, and 'I need to be rescued' and I probably have freaky large eyes.

The problem is that people WANT to see me as the ex-fighter, the still fighter, the about to be fighter. Except in the last 56 hours I almost died nine times; I completely stopped breathing over 21 times, I had four grand mals (we don’t count the minor seizures or partials or ones where I lose speech), I bruised my ribs, tore muscles between my ribs, fell down, bruised my hip bone, and lost parts of speech and time function perhaps permanently. And I have had a de-compensating body off and on every day for a week. So, no there is not going to be the dramatic return, I have taped ribs, I am on pain killers, I wake in pain every 30 minutes for as long as I can remember and I have brain damage, recent brain damage. And my body spiked a fever for no reason this morning which almost killed me. Welcome to the interesting parts of MSA-C variant AAN: this does not include not being able to sweat, or having to hydrate or having my heart not beat correctly most of the time or having a heart ventricle that has atrophied and doesn’t really work, or retention, or losing weight, or the rest of it. Or that fact that without being on oxygen almost all the time I would be dead long ago and have to go between the four levels of oxygen concentration.

I bring that up because I used up a crap-load of energy on writing about Uke’s (not ME, but Uke's who I have no idea why I am interested in) in a post on how Uke’s are able to choose within the freedom of femininity to change roles, change clothes, change everything they want. I used over 45 pictures, with 20 different Seme's and over 28 different Uke's to demonstrate those changes. People didn't like the post. I had to explain over and over again to people who didn’t like the post, and this made me upset. This wasn't, "They don't like my favorite character" but genuinely hurt. Why? So I looked at why I was and then understood that the post was in many way about ME.

The post on Uke's was important to me because before I was ill I had clothes that were for running or working out or training, slightly sexy but functional. When I went into the wheelchair, I went for the corset, the miniskirt, the whole, “I’m a woman, and you better notice me or I’m going stick my boobs in your face!” look. Except that getting ready to go out, which used to take 7-12 minutes took 40 then 90 minutes, then 120 minutes and now 240 minutes sometimes. So getting out the thigh high stockings or getting into a corset for the two hours to go one place before my nap along with everything else, sometimes just isn’t worth it (often). So I’m changing my look again; Victoria Secret hoodies, sexy/gothic tank tops and jeans or joggers. That’s the freedom of being a woman, I CAN change. So now it is simple earrings put in by my home care workers, simple foundation or no make-up at all. And I can leave now in only 90 minutes.

So, if you hate the Ukes, if you hate Gwen, if you hate vulnerable, you hate me. I am the weak individual who needs protecting, I am the person who gets into trouble and needs a strong person to get me out. I need doors opened, drinks opened (sometimes I can’t lift a can of coke). I need someone to hold me when I am scared and when you have a 10-48 hour memory and seizures wipe your mind and you don’t know where you are, you get scared a lot. I need someone to tell me, ‘it’s okay’ and hold me. I AM vulnerable and I will never be able to give back adequately to this person (Linda). She does it because she loves me and because I am vulnerable. I would be HATED by the lesbian groups I was part of in the UK and most here in the US. I am the super-femme who can’t do anything by herself, who has to be reminded when to sleep and then helped into bed. If there is a stereotype for women (except the cooking for one’s partner), I fulfill it. I like getting flowers (it isn’t like I get out a lot), I like getting attention, I like Linda driving me to pet stores so I can play with a pet, which she does, willingly! If there is fun time together or seeing something it is because LINDA created it, LINDA, opened the door and lifted me into the car, LINDA packed my wheelchair, LINDA drove me there, and carried me out, and that is how we go places.

The problem is that I have been the strong one in our relationship, only we reached a point where I COULD still be the strong one....and die, or we could CHANGE. That’s right, we changed roles, so I could live (We were partners, but I had more strength and endurance, and better in emergencies). And I am trying as hard as I can to accept being the weak, helpless, cute but maybe a little clueless femme. Because that is what I am! And I NEED someone who will protect me, who will take me places but let people know, “There is any problem come to me” while letting me know, “It’s okay, I’ve checked your temp and I’ve helped you with your jacket and you can go look around, don’t be scared!” Now that image may make some people VERY uncomfortable, it sure did yesterday with the Uke’s (or maybe it is just that they were maybe guys but looked like girls? In which case, why does that matter?). But that is what I need, and not just in my life, or in my schedule but in the bedroom as well. I need a partner who will carry me to the bed, who will accept and EMBRACE my vulnerability and make me feel sexual for being vulnerable (because being made to feel bad about something you can't help isn't sexy!). Also do you think I LIKE this, or want to be like this? Not really, but I LIKE living so I made a choice: I will be vulnerable, I will be the weak one and love and admire the strength of Linda who protects me because if I don’t, if I don't let myself be weak and Linda be strong...I die.

So, when you talk about how distasteful Uke’s are, or how filling stereotypes or gender roles like this invites abuse, or how Gwen is disgusting or how much you hate her because she is so helpless and her eyes say that she needs to be rescued, you are hating and disgusted by me. Because I need to be rescued, and I need it often. And Linda comes in and rescues me. And I LOVE being rescued because you know what? Being a female means I CAN change and so I can LOVE being action girl and then turn around and LOVE being goth girl and be excited about that and now turn around and LOVE being vulnerable girl. And yes, I don’t speak well, and I get confused and I think I am independent and then need being rescued because I get lost or scared or need to be carried back. And I love it. I love the feel of Linda’s strong back when she carries me into bed. Because that is who I am now. I love that she watches over me, I love that she cares for me, and that means helping me drink, or finding me a straw, or maybe bringing me freaking bon-bons, if you want to imagine that. I love it! Because she is the strong one, and because of HER strength she allows me to BE independent. That’s right ALLOWS ME. Because she COULD let me shower myself and use up all my energy for four hours or come in, over my protests, wash me and then I can go and do a blog; or do some postcards. It is her strength and my acknowledgement of my weakness that lets me have that independence, within her loving care (is that dominance? Or submission? Not to us). So if you hate the Uke’s, and you don’t find them attractive, please don’t tell Linda because, she finds me attractive and I find her attractive. She likes being strong. She likes seeing me when I am happy or excited with some fun she has created, watching me enjoy myself within range her watchful eye.

And right NOW, I wouldn’t have it any other way.

Me, thee and what's next.

I suppose I shouldn’t blog tired and in pain, but then I wouldn’t blog at all. I’ve talked to a few people and they seem to feel that people just don’t “get it.” So here it is, I do not have a chronic condition, which is one which is fairly stable or stays somewhat the same with dips and remissions.

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?