It is too Hard to Live.
It is too Easy to Die.
Only Tony himself, my (estranged) husband and maybe one or two other ppl who ‘know’ me would appreciate that title.
Considering the current state of things…
So I spent the entire weekend at Tony’s, because obviously, we don’t want him to be alone. He is being taken care of by a wonderful set of nurses and hospice, but the majority of his time is being in the company of his sister (he is still living at his own home, the nurses only come a few times a week), although there are other wonderful family members and one or 2 friends who take a turn hangin’ out with Lord Anthony.
He is in bed full time now. He does get up to use the bathroom and wander (with his wheeled walker) into the kitchen to grab a quick snack, but I’m afraid even those brief trips are going to end very soon. He’s done remarkably well, considering. 4 years ago when they told him he was terminal, they gave him 6 months to 2 years, and when he took this latest down turn in approx September and was told he was officially in End Stage Liver Failure, they gave him 2 weeks to 2 months. He himself didn’t expect to make it to Xmas; I told him at least the New Year, then he decided he wanted to see the New Year, and so he has. I think he’s simply worn out at this point though. He’s just tired. He used to be several inches taller than me, now he’s a couple of inches shorter than me.
He had a good weekend, blessedly. He’d had a few bad days before that, which is how he seems to go, a few bad days, a few good days, but each cycle takes a little more out of him.
We had a good weekend, pizza (although he kept trying to fall asleep in his) movies, ghost hunting and crime TV shows, talking and laughing, getting up at 5am, drinking a pot of coffee & eating pancakes then going back to bed til one, lol. Oh, and trying to find the perfect virtual fireplace screensaver, and a free one at that. No, we didn’t find one. I tried out a few then uninstalled them after annoying pop up ads kept obscuring the crackling fires… I think maybe we were too picky about our fireplace too… oh well, we spent a couple of hours enjoying each others company over that so it was worth it. Toby went with me the first night; he’s gone loopy in the head these days, he kept growling at every strange noise and faint bump or child’s screech from the other apartments, and with Tony trying to sleep a good portion of the day, that’s not too productive, especially when Toby’s laying on Tony’s bed and growling, at least when he’s next to me I can put a pillow over him… and press down, ever so slightly… I’m just kidding. I love my neurotic Toblerone. The first night, Toby continued his freaking out, especially when the neighbors finally went to bed (Tony’s hospital bed is in the living room, so I sleep in his room) and we could hear ‘romantic’ noises coming from behind the wall, good lord, I don’t know what that guy takes, but Toby was wigging out half the night. After a few hours of sleep, whoever next door, falls or something (this is how we woke up) and it sounded like someone fell down a flight of stairs, long, loud, drawn out falling & bumping & banging & crashing & thumping… Tony’s jumping out of his skin, and after all that racket, I hear from the other side of the wall a male voice, very bored sounding, say ‘ow’.
Toby stayed with C* over here the next night. And would you believe, Tony & I spent that whole next day wondering why Toby was being so quiet…? Tony even asked me at one point if I had to take Toby out to potty because I hadn’t taken him out in a while, he threw me off for a minute and I was wandering around looking for the dang dog!
Anywho, now I have a Blight kitty laying on my mouse pad, her butt keeps bumping the mouse, and despite all the goofing off & sitting around watching movies with Tony I did, I’m worn out so I’m actually going to bed before 4am tonight.
I just had to share a little. It makes me feel better. I don’t write alot or include a lot of detail because it’s just too raw and difficult right now.
I still think it’s better to be able to say goodbye and spend some time together. I couldn’t do that with my Dad. There was a lot (A LOT) that I wish could have been dealt with but never will be, and so, I must deal with not being able to deal.
Why is it always a ‘Dad issue’? Thank you, Austin Powers.
Goodnight, Tony.
Very few people publicly lay their intimate and personal secrets out for anyone to stroll by and read about, especially when it involves mental illness and/or learning disabilities, although there are a few, notable celebrity and/or higher profile individuals who have come forward and made it a little less of a dirty secret. Particularly when someone is trying to create and maintain an impression of intelligence and normalcy. For example, if I say I’ve seen a ghost, my story is taken seriously by more people whether they believe it or not, they believe I experienced something I can’t explain. Now if I say I saw a ghost and they’re aware that I am Bi-Polar (I am), they’ll most likely immediately dismiss my story entirely, believing I couldn’t be a credible and trusted witness with something like that clouding my ‘normal’ judgment and rationality. The same thing goes for other situations where if someone knew a person was autistic (I’m not) they would probably not consider them as intelligent as ‘normal’ people and that opinion would unavoidably cloud their view of everything the person had to say when discussing perceived ‘intelligent’ or ‘complicated’ and ’sophisticated’ subjects.
I’ve decided I am me, and need to accept who I am and what I am and absolutely not be bothered about what anyone else’s opinion of me and my abilities and intelligence is. I also have grown tired of all the pretending and faking I’ve done throughout my life, trying to fit in and seem normal so as not to be viewed in a separate light as others, and by being separated, would be picked apart more.
So here, publicly but yet not, is a running list of everything we (my doctors, therapists and I) are aware of at this time. Oddly enough and even at my age, we’re still ‘discovering’ things.
When I was 16 a ‘Psychologist’ told my parent’s I had ‘no conscience’. I was actually in a foster home at the time (that will be in a later blog) and our family and individual therapy was court ordered. He said nothing like this in front of me, in fact, I don’t remember seeing him more than twice for 30 minutes at a time, and I don’t remember seeing him as a family at all. I may have forgotten this (I forget a lot, and I remember vividly the most ridiculous and unimportant things!) and I don’t remember in detail anything we talked about!
I added this because for some reason, it’s very important to me. I resent that statement and for whatever reason it’s stuck with me and gnawed away at me for 24 years. Probably because I think my parents believe this too.
I have always known I was somehow different from most people and that I definitely thought and perceived things differently than everyone else I was around or could compare to. From the age of 4 I remember being fascinated with the ‘darker’ side of things. When I was 5 I fell in love with Vampires. I would also lead my younger Brother in archaeological-ish digs in our yard with the purpose of digging up the devil. I wanted to see Him and this Hell place. We’d hit a rock and one of us would screech ‘it’s a horn!’ my Brother would screech and jump back, I would become more excited and dig faster. At either 5 or 6 I ran away from home for the first time (I went to a friends trailer half a street up and sat on their stairs until it was full light, then came back home and snuck back to bed. Their Mom, a ’single Mother’ my parents weren’t thrilled about me taking up with her 2 girls, had answered the door woken from her sleep and told me they weren’t up yet and wouldn’t be for a while. I went back later that day and sat at her kitchen table watching her drink coffee, smoke & feed her Venus Flytrap flies. I enjoyed sitting with her because it was so different from my own Hell/home. I rarely went into their home, my parent’s didn’t approve of that.Kids just played outside from sun up til sundown, went in their own homes for lunch & dinner and never had sleep overs, although I did eventually start going to sleepovers and had one or two, they were few & far between and as time limited as possible.) at 6 I knew I didn’t belong in this World. I hated it, and most of all, I knew I wanted to be dead. So with all that mostly irrelevant information said;
THE LIST:
Bi-Polar (also known as Manic Depression)
Borderline Personality Disorder
Schizo-Affective Disorder
Dissociation Disorder (NOT the one formerly called Multiple Personalities)
Panic Attacks
Symptoms of; OCD, PTSD, Schizotypal Personality Disorder, Agoraphobia, Adult Attention Deficit Disorder, Dyslexia, Paranoid Schizophrenia. Remember these symptoms could be created/caused from the main diagnosis’ so it’s almost redundant to keep adding names when stuff could probably be covered already. I just say I’m a DSM explosion, I got a little of almost everything all over me, and some more so, some less so than others, some missed altogether.
Physically, several of my problems I have now and am developing are a result of my weight gain and past drug use and probably, my age, 40 (12 years of erratic; as opposed to daily/steady/constant; Crystal Meth use). My back problems, my weak bones, weak knees and developing knee problems, sleep apnea, fatigue, irritable bowel syndrome, history of ulcers/gastritis, endometriosis (I eventually had a partial hysterectomy after my 2nd Daughter was born with this as a secondary factor, the first was a prolapsed uterus. That pregnancy was a difficult one, but that’s for another blog entry.) I also have rosacea that has gotten progressively more pronounced in symptoms the last 10 years. I have a minor heart valve problem, I actually contracted Hep C (from drug use several years ago) and somehow fought it off before they put me on the medication for it, and most personally, the genital herpes I contracted from my rampantly cheating 3rd Husband in 1991. Now, I do have one of the Worlds Worst Memories and might have forgotten a thing or two, so I may have to revise this, but for now… this is it. Next blog I’ll tell you what all I take (meds) for this plethora.
***
It seriously has, over the years, seemed like I was ‘collecting illnesses’ and they popped up steadily adding themselves to the list. I know there are people who are much worse off with serious, painful and horrible illnesses, but this is just me. Just my life, just my story. I just don’t want it to EVER sound like I’m seeking any kind of sympathy or pity or whining (although I do enjoy whining within reason!) or attention whoreing. I simply wish to leave something of me, who I am, what/who I was and some of my life experiences. Why? Because I can. It’s pretty much that simple. We all want to be heard and recogniozed as existing, even if it never matters to anyone else, although, being of some positive influence from something one says is always a bonus.
*Happy New Year!!!*
Goodbye 2008 and good riddance! And I thought 8’s were supposed to be lucky. Pfffft!
Let’s hope this roll of the dice is a lucky set of bones.
