h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Hello Barton, Krispy and I are worried about you. Please post and let us know you are ok.

JEllen

Had no idea you were doing so poorly - let me know what's up! - Jen

Here are the details.

I have myotonic mucular dystrophy. Myotonia is a condition where the muscles contract and then don't release. It's like working out till you feel the 'burn' and then finding that you can't stop working. There is never time for the muscles to recover so the muscles work themselves to exhaustion and wear themselves out. Muscular dystrophy means that the condition is due to a genetic problem which cannot be cured and, in general, cannot be fixed.

There are a lot of things that come with this problem. Most of that comes from pain. Pain makes it hard to sleep well, the result is that you are very tired most of the time (and this is separate from the physical exhaustion due to muscles working themself into limp spaghetti). This leads to mental confusion, short term memory loss, depression, psychological issues as well as physical ones.

If I try to concentrate on anything, my mind takes off much like someone with attention deficit disorder. The main difference is that I generally end up asleep and dreaming -- not necessarily in that order.

This hit me in my mid-twenties, making it impossible to finish my doctorate. It also made it impossible for me to be able to depend on remembering my lines as an actor which wasn't fair to those I was acting with.

I gave up my work in the theatre and started working as a programmer and computer consultant. That has become impossible since I can no longer guarantee that I will be able to actually do a significant portion of a day's work.

Over the years, I have learned to cope. I don't attempt to take my muscular exertion beyond the point where I begin to experience serious pain and muscle damage. But, that point keeps getting closer and closer to immobility.

That doesn't mean that I stop, it just means that I experience more and more pain and more and more sleep deprivation.

I have a machine to help me sleep, it is beginning to do some good (for instance, I haven't fallen asleep since I started writing this, though I have had to call myself back to what I was doing a few times). I have medications that help with pain, cramps, nerve damage.

I have diabetes, which is also common with this condition, and I have medications for that as well (though they are becoming less and less effective) but diabetes imposes its own demands on my life which it is becoming harder and harder to ignore or work around.

I take drugs for depression. They help. Depression worries some people, but it is the least of my problems and the most easily dealt with; even if its causes can't be removed, it can most easily made least important.

Of course, most of my drugs have the interesting effect of tending to put me to sleep.

For the last 12 or 13 years, I have been getting some acting in at various Renaissance Faires, doing improvisational work largely on a solo basis. My muscular condition is making it more than merely difficult for me to get through a weekend. I had hoped that I would be able to complete this season, but that may not be possible.

And none of this is as important as the strain it is placing on my life with my love and wife, Richenda. She is now faced with having to support us both. We are not well set, financially. I am 'officially' disabled so I get a monthly payment from social security that almost pays for what is left of my medical charges after her insurance covers the largest portion of doctors and drugs. She fears that she will loose her job and our insurance -- and she might.

Before these recent years, she could depend on me providing the largest part of our income or, at least some significant part. Now, I am lucky to be able to get out of bed and do something useful around the house. The pressure is way too much for her but she has managed to hang on by her finger tips.

She's having her own health problems. She's having her own surplus of pain. She's becoming nearly as exhausted as I have been, and I can't help her. Things are only going to get worse. There is no hope that things will get easier.

Before, I wrote on h2g2 in hopes that I could find something useful to point at and claim as personal or social achievement. I hoped I could at least share some of what I have been given and what I have learned and observed. I also was looking for someway to feel somewhat less than useless in the world at large.

I don't have that luxury now. I don't have the extra energy. I don't have the extra time. I don't have the extra mental capacity to be able to express myself up here, whether or not I have anything important, useful, or merely amusing to say.

There are those of you on h2g2 that I have come to love. There are many that I have come to care about. Several of you have been in my home. Some of you, I think of as the grown children and loves which I never had but which I still welcome in this place to that degree and more.

I still care. I just don't have the time, fortitude, and energy to follow your lives without suffering the impatience that my lack forces on me when I would so much prefer to stay with all of you.

If you ask me how I am, I will say that I am 'doing okay', which is as close as I am willing to go toward thrusting my minor but unfixable problems on any one of you. You each have your issues and your strengths but you don't need to be burdened by worrying things that can't be helped. Believe me, I am doing more of that than any of you have time or need for.

I value your concerns. I value your thoughts. I value all of you. But, I have begun to retrench where I must and I won't be here much at all. If you want to write, I will reply -- whenever I can find the mental cohesion to do so.

I still haven't fallen asleep as I finish this. Today has been a good day. I'm sure there will be many more yet.

Thanks for your concern and for having noticed that I've been 'missing in action'. I'll try to check in more frequently.

Love,

Barton

It's good to know that you haven't disappeared entirely. I hadn't realized that your dystrophy had escalated to that point - that's a terrible thing, and I can only offer my sympathy.

Most importantly, don't feel obligated to babysit us at your expense! Take time for yourself, first.

My hubby has just recently had a stent put in, and he's feeling the same disquiet and need to do something important with his life. I guess it comes with the realization of your own mortality. We all know we've got to go some day, but we always think we have an infinite amount of time to make our mark upon the world.

You've already made a big difference in the world, Barton, and anything else you do will just be icing on the cake!

Machine to help you sleep, huh? Is this some sort of Russian sleep device?

I hadn't realized you were so gravely ill Barton - I am very sorry. I understand now that it is strain for you to post, and that you have to conserve what energy you have. Thank you for posting and explaining - I wish there were something I could do to help.

JEllen

An acquaintance of ours takes pictures every year of the faires... These are the photos from 2004's Bristol Faire. Enjoy!

http://www.robynsroost.com/brf04/brf04.htm

Thanks for the kind words and thoughts -- all of you.

The trouble with explaining any of this stuff is that it always sounds far too awful. It's just my life and it isn't that much more nasty or nice than anyone else's.

The machine is called a BiPAP and is used to provide Positive Air Pressure while I sleep which helps to keep my breathing passages open. It's a pain but it finally may be doing me some good -- as far as clearing up some of my mental issues (which were related to a kind of sleep deprivation). It's taken the industry years to come up with a box that can adjust to *my* needs without freaking out and thinking that I wasn't entitled to breath the way I need to (as slow as 3 breaths per minute and more than 2 liters per breath -- they almost have it right now ... almost).

Thanks for the link, but I've known 'Robyn' and his lovely lady for a long time. He gave me my third 'favour', which I still wear. (Please don't tell me that you were in for their wedding and we didn't meet up.)

Take care.

Love.

Barton

> It's just my life and it isn't that much more nasty or nice than anyone else's.

Funny thing, life. What I wouldn't give to be spat at in the face... No, wait a second. It's amazing what we can put up with in the course of our daily lives, and end up taking for granted. It's good for you to compare your life with other people’s... Well, maybe. It can be depressing, too.

> (which were related to a kind of sleep deprivation).

Yeah, going without sleep can really mess you up! People diagnosed with sleep apnea can end up falling asleep without warning - even while driving.

> (Please don't tell me that you were in for their wedding and we didn't meet up.)

No, you know Robyn a lot better than I do! A guy we know named Frank Hui goes to all the faires and takes pictures regularly, and contributes to Robyn's Roost. He put us on their e-mailing list, but since I haven't been to the faire in three years, I rarely look at the pictures anymore. That's great...

Thinking about you, B - take care of yourself! - J

I met Frank years ago, too. Nice man. Nice photographer.

It isn't the *diagnosis* that makes them fall asleep

As far as suddenly falling asleep goes, Richenda knows that I can't be trusted to drive much more than 45 minutes at a go. Of course, if you feed me crunchy food, like chips, I can go much longer than that. How long that is is completely dependent on utterly mysterious and poorly defined variables. (Check if his jaw is still moving.)

Needless to say, I'm not permitted to do that much driving.

Barton

> It isn't the *diagnosis* that makes them fall asleep

No, I suppose not!

My hubby once had to stay awake and drive, because the friend that was riding with him didn't know how to drive a stick shift. So the friend manned the spray bottle full of ice-cold water from the ice chest, and sprayed R. in the face every time he started to nod off. That would suck, I think. After a while it'd just be worth it to pull over and sleep for a few minutes.