*Author's Note

*Author's Note: I gotta write this quick before the kids wake up. We have Jabber this weekend and have not had a quiet moment since he climbed into the car. If they spill out of their rooms before I'm done, this will disintegrate into a pile of words with no sense in them. Wish me luck!

*Author's Note II: This may disintegrate into a pile of words with no sense in them without the kids' help. It's not fair to blame them for my lack brain cells, even though it sounds better to say, "They did it to me!" then admit I can't string 2 thoughts together without getting confused.

*Author's Note III: I think I'm already confused.

*Author's Note IV: Was I born confused? I'll have to ask my mom, although she can get lost in the simplest of ideas, so maybe that is where I get it from.

*Author's Note V: Maybe it comes from my father. No, he has been stuck in the same rut of ideas for as long as I've known him, so it must be from my mother.

*Author's Note VI: My mother's family is notorious for being... well, out there, off, crazy, nuttier than a truck load of fruitcakes, etc etc. I got the MS from my father's side and got the crazies from my mother's side.

*Author's Note VII: My maternal relatives are fun to visit. It is a whole vacation of randomness. They will pop out something that has no meaning to anything anyone is saying, ever said, or ever even thought about saying.


Wow! Look at the time! It is almost 7am and I have to get my happy arse into the shower before everyone uses up the hot water. I'm glad I got to write down my ideas before I got off on a tangent and totally confused myself. (Blindbeard, you are a fountain of wisdom and a shining example of staying on track and not running off to chase something shiny! You bring a tear to my eye.) Now, off to the shower before everyone barges in to check out my goodies. Tootles!


*Author's Note VIII: I really don't have anything that should be called "goodies." Since losing all that steroid weight my boobs deflated and ran off without even a "Dear John" note. And my arse became as flat as the Nebraska plains, which no one hesitates to point out to me.

*Mental Note to Self: You need to find a better family.

That Damned Note

Yesterday we were talking about The Day Blindbeard Went Crazy, ie when I tried to kill myself. We were talking about the note I left, which was the second biggest mistake I made that day. They took the note and everyone wanted to talk about it. The cop who took me to the emergency room, the nurses and doctors in the psych ward, the mental health review board that I had to talk to to get out of the loony bin, I swear they printed it in the paper with my address and phone number for anyone else who wanted to discuss it with me. I left the note for my husband, not the rest of the world, but no one cared about that. Leaving that note pushed my "suicidal gesture" into an intent and that is what damned me to 5 days in the loony bin because it meant that I had every intent of finishing what I had started. I pulled out the note and reread it to Sugarbowl yesterday, and she said that if I never wanted to pull it out and read it to her again, she would be just fine with that, because the note is sad and it brings back the memories of that day. I'm going to share the note with you -- for the few who have not had a chance to discuss it with me -- because even though it has been almost 4 years since that day, I can still relate to a lot of the stuff I wrote in it, and maybe you can too.


I bought you the soups that you like, they are in the cupboard where we keep the soups and stuff. I don't know why you won't let me go, I don't understand what you are holding on to. There is NOTHING here! I am nothing, I have nothing, my future is nothing, my past is nothing, I have nothing to do, no point to still being alive. The only way I know of to make you hate me enough to let me go is to do something stupid so you will hate me. I know you hate what MS has made me. I know you hate that I don't work and do not keep the house perfect. I know you hate that all I can do is spend and run up bills. I know you hate my tiredness, that I go to bed early and that I do nothing but puzzles. I know that your hate is going to grow until we only make each other miserable. I know that you have that seed of hate for me deep in you, ever since I was diagnosed and you saw what the effects of my having a debilitating disease would do to me, that I could no longer be counted on to make a fortune, that I could no longer help out. All I can do is consume, consume food and products that are sold cheap at Walmart. All I can do is buy, spend, make more problems for you. I can't make you understand how much I hate myself for all this. How my nerves are rattled when I think of you coming home to me and seeing your hate for me grow. Seeing your anger when I am tired or when I am not walking perfectly in public, when it is obvious that I have something wrong with me and you have to be seen with me. You don't think I am bad enough for Novantrone, but you don't see how this MS is chipping away at me and slowly destroying me. You say you are willing to go through hell with me, but only if I am presentable to the public, you don't want them to see me as I am, gimping and lagging, not as fast as I used to be. You can't accept that I am not what I was, that I get tired, that I need rests... I know that you are hating me more as the days go by and nothing gets better, I want to be free of your hate. I want to be free from trying to live up to what you want me to be, I want to be free of the pressure of pretending to be what I am not. I don't want to push myself to be "perfect" for you, it wears me out and makes me worse. The stress is not your job and you being gone, the stress is you coming home and my having to be what I am not when you are here. I hate myself and want to free you from all responsibility for me... this is the only way I know how. You are now free from me and having to be chained to something that shames you. Go and find someone who is all the things you want, all the things I can't be. I have nothing to offer you. I have gave my all and am tired of pretending to be what I am not. I am freeing you and me by this....... [Blindbeard]

I Just Don't Have A Thing To Say

But what's new? So much little crap is going on and none of it is worth a full blog post, so as usual I will just condense it into bite size pieces so no one chokes -- much better than me chewing it up and regurgitating it down your throat for you.

*We are moving again. UGH! Due to circumstances beyond our control -- our landlord having grave financial troubles -- we are being skidded out on our behinds. I am getting pretty good at skidding on my behind. The other day I slipped on the ice and fell, skidding into Walmart on my right butt cheek. No, I wasn't at Walmart, I was going to my car to drive there but the ice thought it would be better for me to slide there on my right butt cheek. I got to my feet and checked to see if anyone saw me biff it, then examined my wounds. In Pride vs My Arse, Pride will win every time.

*Whenever we are talking to anyone about the houses we are looking at, Sugarbowl won't let me talk any more. She says that all my stories make her look like the village idiot and are edited to not reveal what a moron I am. I say that if she doesn't want me to tell any stories she needs to stop being the village idiot, then I won't have a story to tell. Besides, those stories are FUNNY and worth being told.

*Trying to find a house has been a huge struggle so far, Sugarbowl and I differing on what we want. She wants a more expensive house that is bigger and fancier that I think we need. I want a less expensive house that will give us more money to play with once we are in there. She also says that I want to hog the biggest bedroom and give her the tiny ones. In my defense, I keep my room clean and she DOES NOT! One house we looked at had hard wood floors in the bedroom that I thought she should have, because then I could just take a broom and push all her crap back. It also had a long deep closet that she could just keep shoving stuff into. It is a perfect plan! She was less than thrilled with my ideas for her room.

The thought of moving again makes me want to go back to bed for a week with an ice pack on my head. I want to pack up my spotted kerchief, tie it onto a stick from the yard, and leave the rest of our crap behind.

Courage And A Little Hope

At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like making a big friendly dog with a blank look, because that is how I feel when I go in there. I go in happy to see everyone and feel like I slobber all over them, which I probably do but they are too nice to tell me so. I finally came up with my idea and am now going to share it with you. No need to thank me; I'm generous like that.

I am going to make on the big square the Chinese sign for courage and on the little square the sign for hope. I have always said that for me having MS is more about courage than hope, and if I ever get another tattoo -- highly unlikely, the 2 I have are more than enough -- I would get the symbol for courage.

Hope is all well and good in a passive kind of way. I do have hope for the future and what may come of studies about MS, but I can't put all my diseased eggs into that basket. I do not foresee a cure for MS in my life time and can only hope for better drugs to help slow it down. I hope for medicines with better efficacy and with less side effects to come down the pipelines soon, but don't want to pin all my hopes on that lest I be disappointed when they do not come down that clogged pipeline.

Courage is active and I like active. For me, hope is sitting back and waiting, whereas courage is facing what is. Do I have the courage to face what this disease has done and most likely will do to me? Some days I do. Other days when I think about what the future may hold for me, I lose my courage and get scared. Then I start wrestling with the "what ifs," which I HATE and try to remember that I need to deal with what is right now and worry about the possible outcomes when they come. I want the courage to look this disease in the face without flinching. I want the courage to deal with what may come and to accept it with grace. The courage to deal with how the public may react to me -- mainly because I struggle with that some days and want the courage to go out even on my worst days instead of hiding at home. This is a scary disease and I think "courage" should replace "hope" as our catch word. It takes a lot of courage to face this disease and I need as much as I can get. I don't want to be the Cowardly Lion anymore.

In My Defense

I got this comment the other day in reference to my blog post http://http://blindbeardsmsblog.blogspot.com/2009/03/i-hate-puberty.html.


Why do you need to be so critical, how about instead of venting your story off to the rest of the world you remember your own puberty and realize that she just might be embarrassed or scared? How about you try to make her feel better instead of making up a dumb story of how you're going to kill her. Guess what, every other mother has to deal with these issues and you can read that from other parent blogs or watch it on sitcoms. So get over it! Plus, if your daughter wants to play cash cab trivia, maybe you should just go along with it and then stump her. You sound like my mother: critical all the time, doesn't seem to care, and has no sense of humor other than negative sarcasm. I know she really does care, but would you want to be close to someone so cold? And about the bathroom issue, I assume not caring as much develops with age, but for the mean time, wouldn’t you rather they were embarrassed instead of flaunting their goodies to gods know who? Nonetheless, unless you are like the last commenter, trying to vent some steam, to read such negativity from someone who seems to be so negative and trying to prove she is so much better than two children and a bunch of teenagers. I’m sure if your daughter read this when she is older, she would feel bad and be embarrassed for being so ignorant. But you're the mother and if you weren't thinking about how witless youth can be, I'm not sure what you could have been planning for. Aside from that, your writing is quite superb. I don't know what you do for a living, but you can beyond any doubt be some kind of writer.

--Anonymous


I pondered this comment for almost 3.26 minutes last night, reread that post this morning and am now ready to add a little information that might make things more clear. I'm not Princess's mother; I am her aunt. I agree with the whole respecting-her-right-to-guard-her-goodies-like-they-are-precious-metals. In fact, we are very careful about her in the bathroom. We knock and let her know we need to come in so she has plenty of time to wrap herself head to toe in a towel.

It may sound like I am being cold and critical, but I am not. Or I am not trying to be at least. I still kiss on her and hug her throughout the day. I always tell her that I love her, have a good day at school and to not stop being adorable each morning when I drop her off at school. The problem is her teenager attitude. She is snarky, stubborn, quick to point out anything anyone says or does wrong, and 100% committed to her belief that what's mine is hers and what hers is hers, and gods help you if you touch anything of hers. A perfect example: she took my pit juice to school and "forgot" it, yet still popped a vein when she saw me using some of her old pit juice that she doesn't even want. I had to wear a pair of her socks the other day and she bitched and moaned about it until I really did want to chop her into bits and stuff her into the walls. She wears my socks and when she gets home from school, takes off her shoes and walks around in just my socks for the rest of the day, leaving them nasty and forever stained. She needed new brassieres but wanted me to go get a bunch for her to try on at her leisure here and then I return the ones that didn't work and get her more of the ones that did. She was mad that she had to go with me and try them on. She wouldn't talk to me the whole way to the store and when we were done she said, "that wasn't so bad." Last night she told me that she doesn't want anymore vampire shirts -- she is on a huge Twilight kick -- and to get her some werewolf shirts. Aye aye, Captain Craphead, let me get on that for you. She hates having to load the dishwasher so she loads it so nothing gets clean and when I showed her how to load it so things do get clean, she said that if we didn't like the way she does chores we shouldn't have her do them and just do them ourselves, to which we got a good laugh out of and she still has to load the dishwasher. Now she just has to do it again if she deliberately does it wrong.

When she starts up with an attitude that is going to get her into a lot of trouble, I give her a warning and let her try again before I lose my patience. Most days she will take the warning, other days... not so much. I do remember how it is to have your hormones all messed up and try to be patient and understanding about it, but some days she pushes me until I snap, and then, yes, I do think a quiet cell on death row would be nice. Lastly, she reads my blog posts and knows what I write so it is no surprise to her what is on here.

On a positive note about kids, we were playing Apples To Apples the other day and were reading out loud the cards that we had in our hands still when the game was done. Jabber's first card was "Ever glads," which amused us and Princess, in a rare moment of kindness for her brother, told him it was Everglades. His next card was "Canned Indians," which stumped us because we weren't sure what that could possibly mean. It was Canadians, but now we like to say, "Do you have Indians in a can? You do?! Well, you better let the poor guys out!" He also just had a conquer sore in his mouth. I hate those conquer sores; they hurt! Princess used to say that cracktice made perfect and called Jacuzzis, shaboozies. I miss those good ol' days when she was obsessed with Disney princesses and so sweet and funny. Some days I still see a glimpse of that, and I like those days.