Cedric has been sick for months now. I am happy to see him go. He has been struggling so much lately. Strange, I held him just an hour before we noticed he wasn't sleeping, but had passed. Much quieter than Godfrey (thank God), but it is still a loss and I will miss him. But now I can remember him from his healthier days. Thanks for the company Cedric.

August 5th, 2003

The bottle sat in the freezer a bit too long causing the glass to fill quite slowly. This created wonderful anticipation, but delivered so much more than that.

The water was very cold. Cold in a way that almost hurt my throat on it's way down. So cold you would think the glass full of ice cubes. And that's the key to this little exercise in nostalgia - or perhaps melancholy is a better word. Then again, many of you might already be shouting that "BORING" is the word of choice. Okay, onward with tonight's story.

I've spoken often of the magical power of music, how the fewest of notes from an old favorite can cause one's mind to recall past events and emotions. Food can create the same effect. A particular odor can make our minds race to a time past when we were 8 years old. We can see the house we grew up in as it looked those many years ago. The furniture, drapes, even the show on the television might highlight our vision. Well, this message isn't about music or food.

It was a drink of water. Perhaps it could fall into the category of a "food memory", but I choose to keep it separate. I mean, it's only water we're talking about here. Or is it? This time it wasn't anything but another glass filled with water like so many I have each and every day. The chill of the glass made a difference. The extreme cold of the water is what made this drink unique. As the water cascaded over my tongue and down into my stomach, flood gates were opened in my brain and I was transported to another time and place from my past.

It was a drink of water. The coldest water I'd ever tasted. How did she do it? I wasn't old enough yet to understand that the refrigerator had a "coldness" setting. Just like the ice cream always had that odd texture I would later learn was "freezer burn", things in the lower 'fridge section stayed very cold as well.

One second I'm sitting in my living room taking a drink of water from a glass, and the next second, 35 years disappear from time and I'm standing in front of Grandma's "frigidaire". At first I was confused. Why was I suddenly thinking about Grandma? How come the "vision" I was experiencing was so real?

It was a drink of water. The only memory I have of such a cold glass like this was in her home. She must've kept that 'fridge on 11! Okay, now that I'm back on "I" street, what would I like to recall? There she is. In the kitchen. Cooking and cleaning dishes at the same time. She was much more active during my pre-teen years. Later memories see her mostly sitting in her rocking lounger dozing off while the TV played.

But, back to the present...or the past as this case may be. My senses interact with each other making me dizzy as I tied each impression with a moment in time; with a room in her home. The house always had that familiar "grandparent" smell. But the comforters on the beds held their own unique odor. There was the front bedroom I slept in the few times I spent the night there. And the other bedroom with the full-size bed. That room always gave me the "willies". Something about it scared the hell outta me whenever I was in it. And finally was Grandma's bedroom. I don't recall ever spending much time in there. But it, too, had a smell unique to it's place in the house.

By that time, my mind was off on its own. What started out as a quant reminder of how cold the water in her 'fridge was, now included images, thoughts, smells and emotions from the front yard hedges, through the scariest garage I've ever been in, to the rickety fence marking the boundary between the Rubio property and that of the folks behind us. I heard Sam from his adjoining yard grumbling under his breath about who knows what. The kittens Grandma put in the bucket to drown only to have Steven knock it over and chastise her for her cruelty (I thought he was a goner at that very moment).

I forwarded through the years and memories as fast as the water disappeared from the glass I poured moments ago. I finally arrived at the home as it stands today. A new baby has just arrived. Samuel. Denise Cain is living there now. A woman I met by accident through the homeless outreach I'm involved with. The outside of the place looks quite different now, though I'm glad a fence has been rebuilt around the front yard. I'll soon be going in to inspect, reminisce, and photograph for my siblings the interior of it all. Perhaps I'll even tell Denise that the strange "presence" she feels at times around her and the baby is indeed the warm, caring, and maternal soul of our Grandma.

It was a drink of water. But not just any drink of water. It was the best drink of water I've had in a very long time. There are more memories there saved in my soul from years and years of exposure to the house and the Matron who played host there and still does. God Bless you Grandma.

July 31st, 2003

Why such a discouraging thought? Email! At least I would like to blame it all on this fast-paced form of communication; but we know it is more than just that. There is, of course the very basic reasons among them being downright rudeness and selfishness on my part. On another level, there are all the drugs I am taking - it would be absurd of me to deny the effects these medications have on my brain. And then, there is the hardest one to explain because I have no idea how to relate what processes take place to make me so neglectful (and yet I'm about to try and describe just that).

Back in the day of "snail-mail", it was common for others to hear from me only a few times a year. And in that environment, I would carefully work out every word in the letter. I couldn't send a "how's the weather" note to a friend. It had to be a bit of literary genius or nothing at all. J My point is that you had time to think before you wrote. Three days to get a letter to me and another three to get it back. In between, I had time to choose my words. Conversation was "deeper" in those days.

Then came electronic mail ("e-mail"). No longer did one have to wait a week to hear back. All of the sudden, I was expected to reply almost immediately! AAAAHHHHH! What about witty verse? Where am I supposed to put those words I only learned of with the aid of my thesaurus? This was a total assault on my leisurely way of corresponding with others.

I couldn't make the adjustment. Oh, I've tried. I've invented ways to keep your email right in my face only to move to a hidden folder after I reply to you. Nothing has worked. In fact, if there were a category in the Guinness Book of Records, my name would appear under the heading of "Longest Length of Time to Respond to an Email". Not that I'm proud of this, but I've actually taken a year to reply to a very important email I received from a long-lost pal I grew up with (sorry Andy). I currently have emails dating back to February in my "In Box" still waiting a reply.

But why is it so hard for me to keep up with such a simple task as at least acknowledging I got your note? This is where things get rather cloudy. All excuses aside, everything from here on makes no sense to me and I'll bet to you either...but it is therapy for me to try and explain it.
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I forget.
"Uh? Is that it David? You just forget? You gotta do better than that!"
Well, its more than just simply forgetting but I don't know how to describe it.
"I do. You're a self-centered, lazy SOB who doesn't care about anyone else!"
No. Really. I stare at your email. Tell myself I need to reply to it. And the next thing I know, a day has gone by and I didn't do as promised. I don't know where the time went. I can't even recall what drew my attention away from replying. All I know is that it is now another day, week, month and your message is still waiting for an answer from me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What I'm trying to say is that more and more I'm like your cat that hops off the couch and struts across the room only to stop mid stride and wonder where the hell he was going in the first place. I'm not talking about the "Oh, we're just getting older. That happens to me too.". I'm talking about a growing paranoia of what Alzheimer patients live with. I grow flakier every day (and I'm not just talking about that dandruff stuff!).

I understand (not really) everyone who wants to relate to my "slipping" mind - but it is as with all things RSD - my truth is always another layer of most realities. In other words, we all have pain. But 24 hours a day gets old real fast. We all forget things, but "blackout" episodes are a different critter. Like I said, I don't know how to describe it. I think this writing is more an attempt to explain it to myself than to you the listening audience. 

For now, I can only apologize to all of you who are waiting to hear from me. SORRY TO: Mike & Meg, Renae, Andy, Bo, Sue, Chris, Steven, Geoff, Renae, Diane, John & Joyce, (did I mention Renae?) and of course to those who I can't remember at this time! Hope this shed some light on my bad habit.

PS - this excuse holds true for phone calls as well.  J

July 17th,  2003

Okay, that isn't what Martin Sheen muttered to open Apocalypse Now; but the emotion is pretty close to identical. Over the past week, I've gone back to school. After finally feeling like I had a grasp on computer viruses, enough so that I let my guard down a little, I got swept back into the wonderful world of PC troubles.

"Just when I thought that I was out they pull me back in." I've recently been seeing more and more pop-up ads on my screen. This, even though I run a wonderful little gem called Pop-Up Stopper. Worse yet, are the numerous times I would discover an extra menu bar on my browser.

So the internet search began. Why were these things happening while McAfee says everything is okay? Finally my endeavor took me to the site first mentioned above where a little applet informed me that I currently had 8 "parasite" programs running my computer. After days in the registry and lots of aspirin, my computer is finally clean (at least for the moment).

I've added Ad-Aware to my arsenal and re-instated a firewall to try and ward off all those "bugs" some jerk wants to share with my system. But I know they won't be enough. There's just no way to completely eliminate them. They're too good at hiding. Soon I'll sit for a fun evening on the internet and see windows blasting me all over, menus growing on my browser, shortcuts sprouting on my desktop and in my head I'll hear those familiar words...."Theyyy're baaaaack."

So that's where I've been the last few days in case anyone is wondering.

June 23rd, 2003

The fetal position.

Fond memories or visions of pain? I think of that as I realized I'm sitting  slumped over in this chair with my knees drawn up. What came to my mind (which is always a territory to fear) is that it is not so much a comfort as an reflex to deal with the pain. And if that is the case - than the images we conclude are of an unborn person serenely floating inside of mom is nothing of the sort.

I stubbornly have to admit to more weakness and limitations of my body. The situation of "doing too much" is becoming more and more frequent each week is seems. There have been a multitude of problems lately with business of caring for the homeless. Two months ago, there were as many as six vehicles in use for transporting food and supplies to the park among the many other duties requiring an automobile. Today there are NONE! Suddenly me and my "gimp" bus are as useful as any; so I've stepped it up in my volunteering time to help fill-in. What used to be two generally non-eventful days a week is now averaging four or five days. My body is dictating that I need to cut back...while my stubborn mind is saying "I can deal with it. More than ever I am needed to help keep the engine running". The body wins out every time. Eventually, I simply can't get out of bed - duties be damned. Today was that day. The brick wall day. Though the "pace" gets slower and slower, I keep falling short and can't keep up.

Well - "life is full of adjustments" so I will again learn to cope. I will again re-arrange my schedule to be more in-line with my body's abilities and limitations. It's just that it is so damned frustrating.

None of this is what I planned on writing tonite - and now I can't remember what topic brought me to this page to begin with. (I think it was something funny for a change!)

June 11th, 2003

I was then, and am still today, amazed at the naiveté of the public. Every person who is caught using heroin has a joint in his pocket. Thus it is surmised that marijuana leads to heroin! And we bought that statement. I believed all the same crap as everyone else about that "seedy side of humanity". And the lessons taught back then still influence my judgment today.

BACK TO TODAY
Living with RSD has been quite the education for me in so many ways. Be it the humbling nature of how fragile we actually are, to the awkwardness and discrimination evident against  those with disabilities; I've had to re-write in my brain how "drugs" could be beneficial. During the last 7+ years, my doctors and I have gone from Motrin to vicodin to morphine, back to vicodin and again back to morphine . When it was first suggested, I admit to being afraid. I mean, we're talkin' morphine here! That's what they gave mom and dad (and most of the population) during the last hours of their lives. I knew my pain was bad, but this seemed quite extreme at the time.

On the other hand, it gave some validity to my situation. Many, upon hearing I was given morphine commented "Isn't that what they give people who are about to die?". My invisible condition suddenly had some teeth in the eyes of others. The pain must be real. For me though, I still had to work through my own feelings over using such a powerful drug for years to come.

As with any new things coming my way, I went to the internet in search of information on the use of morphine for chronic pain. My search wasn't too difficult. I discovered many who are using morphine daily and still living quality lives. Seems the body takes care of us better than we can ourselves (if that makes any sense). The body is experiencing a condition. A drug is introduced to deal with it. The body takes the drug and makes sure its purpose is as prescribed. In other words, I would get relief from the pain, but not a "high" from the narcotic. This is what the article mentioned above was about.

What? Isn't this a drug used and abused for fun, relaxation, escape? Isn't this nearly the same as needing heroin to survive? Won't I start "jonesing" and bugging my doctor for more pills? Isn't this the attitude of society towards this and other drugs like it?

Though this is still highly debated, I am here to say that morphine can be a life saver (and if you turn out the lights when you put a pill in your mouth, you can see lightning...oh, wrong life saver). Contrary to my fears, it does what it is intended to do - give me relief from the pain that is as much a part of my life as breathing. If you didn't know, you would never suspect I take such a narcotic. The "high" and stereotypical behavior just aren't there.

Enough said (likely too much). In the end, I can't imagine life without morphine and yet, I still feel like I bear the mark of a drug addict. I see the benefits but can't give up the voices in my head reminding me of the "horrors of drugs". Check out the article that prompted this writing.

Hopefully this debate will end soon and those with stubborn doctors will finally offer some real relief to others like me who live with chronic pain. In the meantime, if you know of someone struggling with this issue, comfort him/her that old myths aren't all true.

You can have your soapbox back now.

May 23rd, 2003