“Though nothing can bring back the hour
Of splendor in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be…”
― William Wordsworth
Posted in Read Along
“The earth was all before me. With a heart
Joyous, nor scared at its own liberty,
I look about; and should the chosen guide
Be nothing better than a wandering cloud,
I cannot miss my way.”
― William Wordsworth, The Prelude
Posted in Read Along
Yesterday my husbsand told me he had to go out of town for 4 days for a business trip. I was numb. I didn’t want to be seperated from him, He’s my rock, my reason for living. He helps me survive.
When I found out he was going to Dallas I suggested that we drive and I go with him. He said he would talk to his boss and see if it was possible they would rent a car for us instead of him having to fly, on paper it was even cheaper!
This morning I woke up with an ache in the pit of my stomach. Yet when I talked to Jim he informed me that he could take me on the trip and we would start the drive down Monday. I’m nervous because there might be dinners and I might have to meet people but I’m also excited even though I will be stuck in a hotel room for 3 days while he works.
We’ll see which one wins.
Faithful Readers, I have a new idea I’d like to run by you.
After my last two posts, I don’t doubt that you are saying, Oh no, what kind of awful plan has she got now???
It’s not what you might be thinking.
I’m thinking I might get an RV and have it a bit modified for people with upper body disabilities…and go RV’ing around the country till I can’t do it any more.
I hate where I’m living. The RV I would get will have a full bathroom, which I don’t have now. It will have a full kitchen, which I don’t have now. It will limit the amount of JUNK I can collect….I am a professional junk collector.
I want to go exploring in my favorite part of America: the Wild and beautiful West. Maybe even find some way to volunteer at the National Parks, so I can camp there for free! I can’t do trail duty any more, but I can answer phones…or “woman” the Information Desk and give out maps…I’m sure the National Park Service has volunteer gigs for disabled people!
Like I have said before, I don’t intend to let this disease get me like it got my dad…but neither do I want to just sit around this dratted uncomfortable place until I freeze in mid-air like Dad did!
If I can find a way to make the rest of my life fun and fulfilling, that will mean a lot. Yes, Dad’s life was amazing right up to the point where his disease took over his life and he couldn’t do his magical art anymore. Then he spent five miserable years dependent on others. That’s when my life will go bye-bye. Not doing that, if I can help it at all.
Dad lost his life–although his body stayed painfully alive–when he was 85. My disease is progressing about 20 years earlier than his. And my disease is in my neck, which his never was…and thus it threatens my whole body with the spectre of quadriplegia. Not on the menu, if I can possibly help it.
When I think about cancer, I don’t think “chemo and radiation can help you live another (fill in the blank) months, years. I am not interested in living with poisons and burnings. Yes, I know that many of you are Cancer Survivors, and I totally applaud your courage.
However, I do not have the drive to live that others may have. I welcome death. I’ve had some amazing victories in my life, for which I am intensely grateful. But now I am faced with two terminal diseases (Bipolar and Spinal Stenosis), and my chief aim is to enjoy the life that is left to me, and to go peacefully when the time comes….please God, let me know when the time is right so I don’t miss it and end up in a nursing home for years.
So. I told you I wasn’t going to write about THAT, but it’s on my mind, so there you have it.
An RV would provide me with comfort, mobility, and FUN! I’m getting revved about it.
What do y’all think about that idea?
POSSIBLE TRIGGER: This post discusses suicide.
Yesterday was a pretty good day for me. I actually decided to do some exercising which is a little out of my comfort zone. My youngest son is an amateur gym rat and he agreed to take me down to the gym and pop me on the treadmill. We did that and a few weights. Then we headed across the parking lot to Starbucks and got some coffee.
It’s a strange coincidence that this location of my gym is right next door to the mental health center where my NAMI bipolar support group is held. So the idea was to exercise a bit and then head next door to the meeting. Sort of get out of the house and do two things on the same trip.
I got to the meeting room and saw our leader who is a sweetheart and one terrific guy. He seemed sort of off but I didn’t pay much attention. After all, it’s a bipolar support group. People seem “off” all of the time. The rest of the group filed in and when it was time to start, our leader announced “I have some bad news. Steve died by suicide Thursday night.”
Wow! I was pretty stunned. Who wouldn’t be? But there were lots of reasons it just seemed odd.
Steve started coming to our group about six months ago. The first time he came he announced that he had spent three hours on the bus to get there. He had gone to a NAMI group in his home state and really liked it. So he searched to find a similar group in his new state.
Steve was loud. He always had a quick comment and a joke to share. Once in a while he very slightly crossed the line and sort of hurt someone’s feelings. I know he didn’t mean to do this…..I think he was a little bit manic. He was a nice looking guy….very well groomed and in good shape. He was one of those mentally ill people that you’d never know had a problem if you met them at a party or on the street.
I know Steve had some serious personal problems. He had an ex-wife and he never had anything good to say about her. He had two kids and one was autistic. They were clear across the country. He had moved to our state away from where they were. I wondered if some giant incident had caused him to move so far from his kids. He never mentioned the details.
Steve got a car. He was pretty excited about that. We were all excited for him. I felt guilty about him having to ride the bus three hours to get to “group”. I only had a ten minute drive. (The center is close to my house.)
Now I’m not going to pretend that I was Steve’s best friend. I didn’t talk to him a lot one-on-one. But we talked a lot in group. And if you’ve been in a group, you know you can get pretty close in a small amount of time. You sure tell a lot of stuff in there you don’t dare mention anywhere else.
Last Tuesday Steve seemed great. Enthused about things, but not weirdly enthused. I saw no signs at all that there was anything wrong. Frankly, there are people in my group that could commit suicide and I wouldn’t be overly shocked. Upset and depressed, yes, but not shocked. Some people just have that terribly depressed affect.
I didn’t know that Steve was “dating” one of the girls in our group. They had been doing some hiking and other activities. She’s an enthusiastic person and I would think she had been a positive in his life. I guess he started texting her some strange stuff on Thursday night and she talked him down, but he went on and finished things off anyway. She and our group leader actually went over and found him. I feel pretty devastated for them.
In a very selfish sense, I am scared. Steve was up, dressed, chatting, smiling, and moving along on Tuesday afternoon. By Thursday night, he was gone. Could that happen to me?
When I’ve been suicidal it’s normally at the bottom of my low depressions. I’ve usually been crying for days, get huddled up in my closet, and get on the phone to a few friends and just sob. That’s when things appear darkest to me. That’s when I want to give up and go in the hospital. It’s really scary to think I could go from “normal” to gone in just two days. Can your brain chemicals swing around that fast? What if that happened and I killed myself without actually meaning to? How do you protect against that?
I’ve experienced this before. I was in the hospital many years ago and had a roommate who was in her 50’s. She had several grown kids and a nice husband. I had met them when they came to visit her. I had only spent a few nights with her, but she seemed awfully nice. She got released and went home and killed herself that night. I was devastated.
I’ve read that sometimes people make up their minds to go and then they are at peace with it. So they go about their business and seem normal to everyone else. They might make some arrangements but they are subtle about it so no one really has a clue. I wonder if this is what happened with Steve and my friend from the hospital.
Anyway, I will miss Steve. I will miss his loud sense of humor. I will miss remembering how much he wanted to be with us as he rode that bus for three hours. I am sad that the girl and my group leader are so stunned by having to find him. And if I am this sad, imagine the people that really knew him.
If you’re in your right mind, suicide is just not the answer. Steve, we will miss you.
Posted in Read Along
In which I start off peeved, but end the post on an uncharacteristically positive note. Triggers: wtf happened to the real blahpolar?! Send in the (hot female) Mounties. Tyvm.
A caveat for my readers: none of today’s rants apply to you lovely people.
You know what (else) I don’t like about the heal thyself without psychiatry brigade? I haven’t seen any so far that have bothered to factor in the severity and differences within a disorder. They don’t even explain their own diagnosis and/or experience. I don’t think that their claims are relevant without those details.
Know what irritates me about bipolar bloggers who are just a little too glib? They usually talk about their mood shifting from one minute or one day to the next, without ever saying ultradian or ultra rapid. Either they’re lying, or they need to fire their psychiatrist for not explaining their diagnosis properly. Or they’re lying. Yup, that’s probably it.
Let me tell you what annoys me about laypeople without bipolar who blog imperiously about how to handle the disorder. Everything. Blog about caregiving or support or something. No matter how empathetic you are, quit telling us you know how it feels, because you do not. Aim at humility, not humiliation, you fuckers.
I feel guilty about being pissed off by this, but it feels kind of shameful when I’m in a better space and everybody in my ‘real’ life goes well done wow awesome the meds are working it’s fantastic yay! Anything more than quiet happiness/relief about it is just too much pressure and although probably unintended, can feel a tad patronising. Please just say something along the lines of that’s really good to hear, long may it last. Thanks and sorry for all the neurosis.
How about the culprit itself – we all get angry about bipolar, right? The reason is simple to state and complex to understand; it’s a low down, yellow bellied, snake of a dirty thief. I can tell myself it’s fabulous to have the extra perception, empathy and more intense emotions, but I’d trade it all in a heartbeat for peace. Anyway, them’s the breaks and when I don’t hate my own guts, I like myself lots.
Here be foolosophy:
Contrary to appearances, I don’t spend my entire life pissed off. Sometimes I’m morose. Ahem. Nah, you guys must know by now that I laugh a lot. It’s great to come here and rant and vent and eventually along the way, I laugh at myself for being pissy.
I don’t do soft focus inspiring and motivational clichés, I sorta wish I did sometimes, like the way I wish I had some sort of faith. Because then there would always, always be an answer and meaning, whether there was a solution or not. Genetics, nature and nurture made me what I am and the way I perceive what we call reality, isn’t going to change. Without proof, how could it? The answer for me is always no reason and there just isn’t any meaning. Don’t tell anyone, but I secretly look for silver linings, always. I usually find them too, no matter how reluctantly; lessons are silver linings, for instance. Back to chaos and the absence of meaning … u.npredictability becomes reliable when that’s what you expect. Good things are especially sweet when you’ve considered the worst case scenario too. Here’s the best and most optimistic thing though – wait, we need a new paragraph.
No matter what the hypotheses and observations and analyses, no matter how deep the abyss and how painful the breaks, there are always good things too. People misunderstand karma and expect very clear checks and balances, but that’s not how it works – and I’m not going to explain it here. So, without expecting a payment of good for bad, bad things happen and good things and nobody knows which will happen when – but we can be relatively certain that at some point, something nice will toddle along smiling. At which point, a quote from wry realist, Kurt Vonnegut is the best way I can tell it.
I tend towards stoicism in a big way, I assume most (all?) survivors do. I can laugh my ass off, make other people laugh, hide, isolate, go completely silent, but I don’t have to do that here and I never want to feel that compulsion either. I get cross with myself for the times when how are you feels like a trick question, because it never is one. It’s courteous and/or concerned. End of. This is my brain on it – maybe yours too:
Please don’t ask how I am, please don’t, I don’t want to lie … oh shit they asked … maybe if I point to that butterfly they’ll forget they asked … let me do a distracting tap dance … shit shit they asked again with ‘are’ in italics, this is serious … what am I gonna do … if I say ‘fine’ it’s a lie, if I tell the truth, it can be a very boring buzzkill, I mean … even I get bored with it … oh fuck there’s no way out …how pathetic is it that I get embarrassed inside my own private thoughts … okay I can do this … I’M FINE, THANKS SO MUCH FOR ASKING AND HOW ARE YOU?
Way to overcomplicate a really simple thing; it’s eye-rollingly bloody unnecessarily exhausting. I’m working on it though, I practise on very close friends.
How are you?
Coping, but feeling crap.
How are you?
Struggling, but I’ll survive.
How are you?
Please leave a message at the beep.
How are you?
Today was a pretty good day.
How are you?
Zomg fine, I really am fine lol whut, this feels weird!
It already feels easier.
Where was I?
Well. my doctor told Bob that my surgery was by the book; very simple and couldn’t have worked out better. I was a little shocked at being rolled into recovery–it didn’t seem possible that they were through already. I kept asking if they were sure they’d done it. They told me I’d be aware of it in about 10 minutes as they put more morphine in my drip. And they were right.
Bad night last night; they’d told me to drink a lot so I spent the night peeing. Other than that, I’ve felt pretty good. I’m about to take my pain killers and rest up for the rest of the day. Hope you all have a good day.
Posted in Read Along
Whenever I think of saying ta-ra to anyone, that line from the Hitchhikers Guide to the Galaxy pops in to my head – that and the number 42! Sometimes I say it, sometimes I don’t; it really depends on who … Continue reading 
Posted in Read Along
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