Time.

Snow on the ground again. Not too much, but its not christmas, so fuck off. Listening to richard Bacon on Radio 5. Any ex pat would tell you that listening to the accent /language / topics of interest, from home, is incredibly comforting. Its still the same old bollocks, but with an English slant.
Snow.
Yesterday I spent the afternoon with a good mate of mine Andy Taylor. I've been away from England for over 11 years now and  have realized I've  had friends over here for years now. I think the length of time you are friends with someone, makes an enormous difference. I'm very lucky in that I have really good friends who I've known for over 20 years.
Looking back i can see what my mum and dad had with their friends when I was a kid. The one thing you cannot buy  is time, the longer I'm here, the more I appreciate it.

Indefinite Object.

I looked to my right, there was something sitting on the chair. I didn't remember it being there. I've been in the house on my own since Friday. Hmm. I picked it up, waved it about a bit, still none the wiser. I thought it could be a bizarre speaker thingy for the iPod I must have got and forgotten. If looked quite leathery but didn't feel it. I put it down. I still didn't know what it was. It looked bizarre, an object that I knew must have come from somewhere but I had no idea where. Alone in the house. Then the smell hit me.
This morning, having scoffed a load of crisps and chocolate since Friday, I'd decided to eat healthy. I'd had a banana for breakfast. I'd been so pleased with  my healthy eating that I'd left the skin n the chair as a trophy. No ghosts then. Ah well.
Optic Neuritis and a malfunctioning Nervous system means that I'm always ready to see or sense something I know is not there. Not today, though there's plenty of time left.

Happy Slumpy

This weekend, the weather decided to change its mind and take the road back to crappy. Beth went down to Illinois Friday, having set me up with emergency food rations to see me through until Monday evening. I took this as a signal to do as little as possible. Weather change is always very bad for MS and I've been limping around a bit.
I've been limping from top food to top telly. Not so bad after all. I've been watching the end of the Olympics which I really enjoyed, anyone who gets to the bottom of the hill during snow board or ski cross, deserves a medal, for still being in one piece.
The weather is going to get worse as the week wends on, with the final arctic nightmare due at the end of the week.
By this time, I will have lumped through the airport and gone to Mexico, Not so bad. I'm playing out my time, looking to stay in one piece a best I can, then I'm off. Happy slumpy indeed.

The Pendulum.

I just listened to a Radiolab program on NPR about death. When people on the street are asked if they want everything that can possibly be done to prevent it, they all say yes. CPR, infused food and water, pain drugs, whatever. When doctors are asked, they do not want to be revived. The only thing they want are pain drugs, to make their passing comfortable.
When I was asked a couple of weeks ago what I'd like done, I said I didn't want to be revived. If my times up, its up, whack me up on pain drugs. The doctors didn't want to be kept artificially alive,as they actually knew what it meant.
 My take is that I'm living far beyond what I expected. When I was told I had MS, I didn't expect to make thirty. When I made forty, I figured I wasn't leaving for a while. MS being what it is, my life has been a constant series of adjustments, for decades.
When it gets unbelievably bad, I'm ready to go. I've done a lot more than I ever thought I would. Anyone who is told that your life as you knew it is over at 21, has had a long time to think about what it means.
I've been a musician, a comic, an actor, moved countries. I'm off to Mexico soon. Not bad really. I still have things I want to do, and I'll go for all of them, all the while knowing that the clock is running out. The pendulum swings back and forth a lot more with MS. I prefer to see it as a rollercoaster.

Waterlog.

Today the weather broke, the snow and ice are actually melting. Its flooding quite a bit. I realize this means  nothing to my friends in England, but driving past my local park with the ducks from the pond on the other side of park, happily floating on what used to be the path, was quite something.
The weather has been so bad, Beth and I spent our time outside murmuring, "Nice day, nice day," despite the fact it was 41F.
Tap not currently on perma-drip, though I know more crap weather is coming. As a solution to this, we will be going, to Mexico, to give the weather time to stop sulking.
Winter Olympics still puttering on, with the never ending ice hockey mercifully replacing the curling, which I actually liked, just not that much. Best event I've seen? The Snowboard Cross, Death Race 2014 on ice!

Ice epic.

The snow is melting. The ice like the drunk you never wanted at the party in the first place, refuses to leave. The ice that has melted has left lagoons awaiting the unwary that bounce off the kerb. Beth and I went shopping, to prep me for a weekend alone.
 It was fine going down to Kroger, but going to The Brown Bag on the way back? Ice epic.  Small hills of ice surrounded the way in. But the sandwiches and soup are so good. Went for it anyway, with my version of what I believe is balance , seeing me to the door..Got the food, great as always, and somehow managed to get back, with very little disaster. One bag muddy, and chucked. All food intact,  lunch amazing. I'll take that as a win

Drown in Pieces

Last night our house was soundtracked by the thump of melting snow, thudding to the floor. This morning, the news  is full of potential flood warnings. The snow had to go somewhere. The tap is not currently dripping, though it will have to go back to slow dripping for its life, by the end of the week.
The past few months have been water based, either frozen and crap, or floody and shite. I'm looking forward to the two good days a year we get in the Spring, and their cousins in the early Autumn.
When I lived in England I understood what bone in cold actually is. Having lived in for over 11 years, I'm now very aware of what changeable actually means, along with death weather.
Winter Olympics rattles on, with people who have trained for years, losing due to a mistimed second. Isn't that though, life though? No it isn't.  We usually make the same mistakes  over and over for years before realizing, we may have lost that one.
More pieces fall, flood imminent.

Carnage Time.

Schools in Ohio have had a lot of snow days. Some are getting very upset about this. I really don't think there is a lot of choice involved.
 Valentine's day was yesterday, the flower people still had to deliver. If, like us, you thought, "fuck that", ordered food and stayed in, there were people who had to deliver your dinner. Didn't matter how dangerous it was for the poor sod who had to bring it, as long as we didn't have to. It was a bit late, of course it was, an evening of people saying "fuck that! let someone else deal with it." I was just happy he made it at all.
 Defeating the weather is a common call in America. The weather doesn't care if its Thanksgiving, Christmas, whenever. What I find fascinating is that every year there are specific choke points when there are way too many people are on the road, for things that are seen as more important than taking your life in your hands to get to them. Carnage of a sort always ensues, and the holidays go on.
I say America because i live here, but England is the same, at different times. Its Bank Holiday, lets suffer on the road for hours, for a brief trot around somewhere, thats not as good as it was last year. But, we always do it. Suffering for brief glimpses of something we vaguely remember, turns out to be what we are prepared to pay for.
Carnage aside, we can always dream.

Break

The weather backs off a little, the sun shines, the tap stops dripping.
 I just came across that Margaret Thatcher film on the telly. Its quite a good film though we haven't reached the miners strike yet. With the level of spying and lying going on at the moment, Thatcher's reign is beginning to look quite sweet. Hang on, fuck that, I grew up in that bullshit. Having said that "Age does not wither what she did." some of it was alright, right? I know America thinks all the English loved her, we didn't. Though she did what she said she was going to do. Not always likable, but not a liar.
The dog still remains basically static, awaiting Spring. i think she may have the right idea.

Barkatron

You live, you die. What to do in the middle? If you believe you are killing time, suffering before you head off to a well earned eternity? Well done.  I think you are a little simple, but well done.  By that reckoning, they should chuck open the doors for me, having lived hell on Earth.

 Don't let anyone with MS tell you otherwise, we all have an invisible living helo that we live in, and don't like o talk about.

"But you are talking about it Si."

Its cold, crappy and I feel like it. The interesting thing is that no matter how awful I write what goes on, I 'm still nowhere to telling how it actually is.

"Why?" 

Like all people with MS, I have had the time where I was thought to be lazy, the time when people got very guilty for doubting what I was saying, and the moment where I told them exactly what was going on. Watching that level of dismay fall from the eyes of the people you love, is not something I . fancy doing twice. This is why, although I missed this week, the MS Yoga class is so helpful. A room full of people who know exactly what I on about, where you can say the harshest crap you have to deal with, whilst not worrying about hurting anyone's feelings.
Do we still lie? A bit, but nowhere near as much.

"Why Barkatron?"

That would be my pooch Abbey, trying to woof the weather away.

Flinch.

I came across a Charlie Rose with Bill Murray this evening. It was an hour or so, and I sat transfixed as Bill sat and thought about the answers he gave. Most interviews are a quick trip to the flashcards they have learned. This was something else.
The question he mulled over the most is what he would like to do. He thought for a while and then said, he would like to present. He wanted to live in the moment as much as he could. That's it. I think that is exactly what I would like to do.
In the past few years my MS has got progressively worse. I've had to start doing infusions, just so I can maintain walking for as long as I can. I spent most of last year re-learning the basics, doing physio therapy for months, whacking myself out on loony tune nerve drugs,  waking up somewhere near Xmas, wondering what the hell had happened.
Looking back, it was different but not undo-able. On the one had I remember very little about most of last year. On the plus side, I had a good time when I was aware of what was going on.
What I'm looking to avoid as best I can, is my tendency to flinch.  I dumped all performing, all arty stuff of any kind. I'd started last year writing, then the nerve thingy wiped me out. I'd already stopped performing when I lost the ability to walk, a couple of years ago. I built that back through the infusions and exercise but i still don't think I can perform. Well, safely perform. Can I stand and talk on a stage? I think so, it would take time to get that muscle back.
What I would really like is to find something arty I can do. Writing is beginning to work out, but I do like company. Still don't know what else I can do, but, if I see it, i'll try not to flinch.

Sing a long a Stewart.

Last night Beth and I rolled up to Stewart's 40th birthday shenanigans. We arrived around 11pm. Beth was driving so I took the drinking duties for our house. What a great laugh! We were all having a great time, then Club D tipped it over the edge by piping old 80's tunes into the room we were in. Turns out, belting out old 80's tunes, we all used to sing along to the same ones. It was a moment of transatlantic glasnost, as finally, Simple Minds got their fair due.
Beth and I took the 80's one step further, by hitting Whitecastle on the way home. We had the right to party, though our kitchen is now littered with the boxes of burger shame, of the early morning before. We only ever go through a Whitecastle drive thru at 2 or 3 in the morning. I'm always happy to get the food, and always amazed at the people who are sitting inside. What are they doing? Would I walk in and say hi? No. Well, maybe.

Winter reflection.

Watching the winter Olympics. I watch the precision of the athletes and really enjoy it. I sit shaking my head in disbelief at some of the moves they can make their bodies do. I don't sit fuming over the bad luck that landed on my door step, well I landed on the floor, decades ago.

What actually gave me pause a while ago was when I realized that I'd spent more of my life ill than I had well. That more time had been spent recovering from something you couldn't see, until it got exceptionally bad, than doing what I wanted to do. 

i've re-learned to walk more than once, take dangerous risks with the drug that helps me out, have lost months/years at a time. In the end I look at this and think, so? 

I thought I'd be long dead by now, a tragic, "If only…" case. I'm over ten years ahead of where I thought the path would end. I've done more things than I would of done if I hadn't been ill. I did comedy because I couldn't play in a band any more, I did acting when I knew I couldn't sustain what I knew I needed to do, to push the stand up forward. Right now I can't do that. 

Is it awful? "If only…" No it isn't. Now I write, and the songs I put on reverberation comedy are still doing well.  Number one on the chart on and off,for ages.

What do I mean? Don't give up. Take it from me, you have no idea what's coming around the corner.  Listen to a lot of music, whatever style you enjoy, read, see and do everything you can. Don't worry if you get caught out ,and stuck in your house for a while. That's what YouTube and Netflix are for.

Fed and happy.

Went to Explorer's Club with Stewart, where we feasted on their Caribbean menu. The food was fantastic, well oiled with Sangria and Irish coffee. Came home to the Russian Olympic opening ceremony, ring failure, small child flying through the air and the small hope that one of the countries that has sent their one winter athlete, wins. Now its all gone a bit trippy, with giant pepper pot looking things going around and around. Bless.
Sorry, turns out that was the Kremlin. My bad.

Cold and grumpy.

It doesn't matter how glorious the Art we make is, everyone wants the cheapest,  easiest piece of old tat they can consume. The world is full of corporations hurting people, having a fund waiting to pay the law suits they know are coming. Funds you gave them. Drugs that tell you to your face they may kill you but it could be your fault.You have checked everything and done your doctors job for them, right?
The look of my parents when I was younger is beginning to make sense. They had lived long enough when I was young to see the see the same old bullshit repeated over and over.
Whats happening now, is that we are being forcibly returned to childhood. Facebook is a huge culprit. Like, LOL my arse. But, I look at it everyday, I may miss something. I'll post this blog there. Its good to know what people are doing. No, it isn't, its delusional.
Facebook films that no one will watch but you? Pathetic, though there seem to be lots of them, and plenty of people happy to lie and say they have seen them. Just because its instantaneous, doesn't mean its any good.
This doesn't mean there isn't great art around, you just have to look, rather than click. LOL etc….

Ice Station Thurman

Its really cold. The dogs want nothing to do with the garden, the signal that its all gone to freezy shit. Today my blood is busy absorbing the Tysabri I got jacked in yesterday. They took my blood while I was there, so they can check how much trouble I may be in. Last year I was told "Uh- oh.." then, "Oh, as you were...." 3 months later.
My iPhone is acting up, the iTunes is for shit right now and I can't be bothered to fix it right now. I remember the days of records, warmer days when a stretch was something you lived with. Tapes could be respooled. Digital appocalypse is crap, nothing to do but be told that a sync is getting getting ready, then nothing happening. We've all had dates like this, we used to go home, have a drink and put on a few tunes. Bollocks.
In the house, I'm not going anywhere unless the weather sorts itself out. If you could fix my tunes as well? That'd be great.

Ice-capades

Snow everywhere. all the news is icy and bad. I woke up sitting on the couch, I vaguely remember how I got there. It was just Abbey and i downstairs. I went to stand up and my left hand side collapsed. I didn't fall, but i made a good attempt at tanking out in the front room. Bugger, whats going on? The weakness continued for a while.
I called for Rudy, who had decided to hide upstairs. Fed the dogs, who then wanted to go out in the garden. After 5 minutes hey came back in, and I toweled them both off. Left side still weak. They then decided they wanted to go out again. But I just brushed you both off? Out they went.
Coffee on, left side improving a bit. Dogs bounded back in, they had both realized the weather was shit, inside was the place to be.
The left side collapse is a little scary but not entirely unexpected. I'm a week late for my infusion, the weather is on the aggressive side, and MS thinks that impaired walking in icy weather is funny. Snow emergencies mean I'm not even sure that the infusion will happen today. There's always Netflix and a blanket.
Coffee is settling in, things are a little better. I think I'll have a banana.

Morning rush.

 When I was at university I couldn't wake up without drinking a few cups of black coffee with 3 sugars and a can of coke to take the edge off. This morning I made the mistake of drinking two cups of coffee with no sugar.  One cup over the line, too much coffee. Its only two cups, but it makes the difference between waking up and feeling the effect tweaking everywhere.

I don't go out drinking like I used to. Hang on, that isbollocks. I do drink like I used to, just not half as much. No, hang on, I do drink but I know when to back things off, usually. 

MS means I am vigilante at all times about this sort of thing? Bollocks. I am aware of the cost, I just don't care sometimes. It is always around good friends of mine? Pretty much always. My mind is folding over on itself fueled by the coffee? Definitely.

Sandbagged.

Managed to get to MS yoga. There are many things I love about the class which is one of the few places I can go where everybody knows exactly what I'm on about. The class keeps getting better and better as our teacher Jenn discovers more and more things for us to try out, all of which work. I may have made jokes about us being tortured and such, but to this day, the class is the single best thing I ever did for my MS.
Today was a sandbag, initially on my back and then, supported by a block, on my forehead. Sounds horrific, i don't think I ever been that relaxed in the class before.
Onto Northstar, which we got to most Mondays after the class.Bumped into Sue and Beth on their way to a play. Picked up excellent food, I can highly recommend the fish sandwich and the chicken with avocado. Came home ate that, now sleep. Did I mention how good the sandbag was?

Wiped

The wait for my infusion and the crappy weather has wiped me out. I get reduced to moving through my day as the faded shadow of what I thought was coming. Yoga is at 4. I'd like to get to it, I'd prefer if they turned up and we did it in my front room.Sod it, I'm going. I just felt the fuck that part of me I'm always happy to see in times of wipeout. We can also get dinner from Northstar which I adore. I'll be off then. As you were.

Morning Resolution

This morning I was up early, I'm usually up early. I went back to the reason I have a page called Resolution. I made it because I found myself going to YouTube, finding a song I liked and using it as a jumping off point to find songs I felt made sense to follow it with. I really enjoy doing this I find old songs I really like and tunes I've never heard before that are excellent.
I haven't done this properly for a while, one of the signs that MS is kicking the shit out of me is that I stop listening to music. The sign that things are improving is when I sit listening to tunes again. The sign things are really going well is when I write songs. I haven't done that for a while. I really want to write and record new songs, arms fucked or not.
What happened this morning was that I came across King Bee Back By Dope Demand, a tune I aways liked. In the comments section they where all talking about Tuff Crew, that I'd never heard before. Great tunes. From here I went to a documentary on the history of Hip Hop. It then snowballed into watching a Public Enemy documentary, then NWA, Ice T, finishing out on Jay Z.
All these artists have one thing in common, determination to make things happen, and top tunes.
The last two years have been difficult, in that I can't see how I can ever perform live again. What I can do is find another way to do what I do. I love music and I can write. Resolution.  Every documentary I just watched  is on the Resolution page. Thanks,  for a very useful morning.

True Coffee

I was supposed to be infused yesterday. Tysabri, which has helped a lot over the last couple of years and hasn't dropped me stone dead as yet, is missing in action until wednesday. The new year is always fucked medically over here, as everyone has to take a look at the living nightmare system they have to try and justify once more. Bad weather doesn't help. New blood will be a little late.
They say you can tell when you need a new infusion as you feel energy reducing. I got it in my head that I could tell a couple of days before it was time, as I was about to be wiped out. I can tell, but its not as awful as I believed. Its just the same shit I've known for decades, I prefer not to have it but I know what it is.
Its times like this I find I lose a lot of sleep. I stay up as the quiet is easier to deal with than the day. I catch up on things I may have missed. This morning I watched the first three episodes of True Detective which is excellent.
We are out of coffee filters but have the metal one, which I have used to make a rather nice cup. Of which I've drunk three. This is bad, as I can only really do one. Having said that, it kind of helps with the energy issue.
Warmish weather today, crap weather week ahoy. The pipes still haven't bust, they drip a little constantly, and live still.