17.5 degrees Dec. 15, 2010

Well, if cold feet can stop a person from getting married, then I may be single for the rest of my life.

Comments about my postings

It was only this morning that I discovered why I could not see any comments to posts I made on my blog.
When I set up my blog "Forever Endeavor" I was either too dense to understand, or it was not explained well enough that the bloggers dashboard was supposed to be the site from which to manage the ForeverEndeavor site, and that from there I could see and manage comments made about my postings.
So, please make any comments you would like, and I look forward to learning what you think.

Thank you.
John

Monday the 13th

I am sitting at my computer on Monday December 13th 2010, and this question came to me:
Who was it that said that Friday the 13th has the market cornered on bad luck?
It seems that Monday the 13th would be a more fitting choice of day than Friday!
If anyone has any idea where this designation was chosen, I would honestly like to hear about it.

Don't let anyone know you can do this

    I remember when I was about 25 years old, my father showed me how to change the front end suspension on a VW that I had just driven all the way across the country. In addition to needing new rubber parts and ball joints replaced, there was a thing called a steering pamper which kept the whole steering linkage from vibrating as it reacted to bumps and ruts in the road.

    After that, he showed me how to adjust the alignment. Then we took it to a place to have the wheels balanced.

    Once these things were done, the car ran beautifully. And most of the important work my father did as he demonstrated the procedures to me.

   He told me, "Don't let anyone know you can do this, because you will end up doing it for your friends and relatives for the rest of your life for free."

    Now I have multiple sclerosis, and I have trouble doing things that were easy for me in the past. And I can see how the advice my father gave me about automotive repair applies to everything. It seems that people who know what I was able to do before becoming disabled think that I must be able to do the same things now. Or if I have trouble doing something, that I must not be using skills and knowledge some other reason.

    Modern science and medicine have never been able to explain how multiple sclerosis is caused, and they have not found a cure for it. I am stunned at the number of people who believe that there is a conspiracy keeping the cause and cure a secret for some kind of financial or political gain, but for those who believe I am keeping such secrets I have a large degree of resentment.

--
JFC

Lisa's own personal cuteness.

There is something very compelling about a cute five foot tall woman who has a great mechanical aptitude as well.

Dec. 2010 What to do?

    It is a sad thing, but true. This last decade showed me the best times, and the worst times I have personally seen so far.

    Like many people before me, I have learned that I will not truly be able to know anything in an empirical sense, and I wonder if there is anything other than love of friends and relatives that I will "take with me when I go."

    The things I thought I was learning, and the things I thought I would do with those things, are becoming increasingly difficult to access, in both my hands, and my memory.

    I now see that my interaction with other people has produced results that nw confuse me. It is possible thst there is no moral to the story, or that it will reviel itself eventually, but I have no way of knowing what to prepare for.

--
JFC

The sharps container

When I was diagnosed with multiple sclerosis I was prescribed Copaxone which was to be injected daily. I went to my local pharmacy and picked up a container made to receive the syringes when I did each injection.
The container is bright red, and is labled with clear bio-hazard warnings.
When the container was getting full, I made some phone calls to find out how to dispose of this dontainer.
I had been doing these injections while at work, so I called the waste disposal department at the town hall. The person I spoke to said that my doctor should be able to dispose of it. I called local hospitals and asked if they had a way to propperly dispose of it, but nobody knew how to get rid of it.
I called the city waste department, and they actually told me to disguise the container, and to just put it in the trash!
Finally, I asked my primary care doctor what I should do and he told me to bring it to his office and he would get rid of it.

The right way to play

I know a person who took ten years of piano lessons and could play beautiful classical music, but she was unable to improvise. Without the sheet music in front of her, she couldn't play.
  I think it is wrong to teach that there is a right way and a wrong way to play. Especially if teaching a child. Music as a form of expression suffers when a musician is not able to hear and feel their own emotional influence on the music.
  I gave my acoustic guitar to my eight year old niece and was told to make sure she understood that it is noy a toy. I asked why we call it playing an instrument. Or why we say that is for playing music.
  Sure, it can evoke emotion other than happiness, but playing it should be fun for the one playing. Otherwise the motive is going to compromise the quality of the music being played.

--
JFC

Disbelief

If anyone had told me that I would be unmarried and socially isolated at the sge of forty five, I would not have believed them. Yet, here I am. And, even harder to believe, I prefer to avoid social situations now.
The public voice I have is not at all what I would have expected.
Disability came silently, and invisibly. It is something I expected eventually, but I expected to be much older, and possibly prepared for.
I do at times enjoy the quieter lifestyle of this solitary retreat into my own thoughts. But I obviously don't want to be totally alone, or I wouldn't be writing it here.
The people who deliver prescriptions from the pharmacy have become my best friends. The actual old friends I have, I speak to by telephone or email. I always enjoy the occaisional reply.
Please feel free to leave comments on my blog entries.

New medication today

   Even though I seem to have more pep today from this new medication, I am exhausted from the doctor's appointment from which I did not get home until around 9:30 PM. The medication was handed to me by the doctor. It was a box of samples she had in her office. For all I know, they may be placebos she keeps around for when a patient gets pushy about getting a new prescription. I have no idea how much the stuff will cost if I actually do have it delivered by my pharmacy.
   I guess that someone with a chronic illness should have a huge sum of readily available cash for just such circumstances.
  I am currently waiting for the pharmacy to call to tell me they are ready to deliver a different medication I had refilled this morning by phone. And I am hoping that I have the co payment in my wallet.

--
JFC

Something I try to live by

Never cease loving a person, and never give up hope for him, for even the prodigal son who had fallen most low, could still be saved; the bitterest enemy and also he who was your friend could again be your friend; love that has grown cold can kindle.

Too hot to do much of anything

I just started my daily routine, which is to do the crossword puzzle while I have coffee and take my medication.
Then, usually I check my email, and check the MS support site on face book. But, as I went to look at my gmail in-box, I heard the vacuum cleaner downstairs.
The last time my mother vacuumed in hot weather, I had my air conditioner running in my room, and my mother had her's running downstairs, when the fuse blew, somehow it corrupted the driver for my wireless network software, and I had to get a new network adapter.
This time, I shut down my computer, and waited until I heard the vacuum stop before powering up my computer just in case another fuse blew.
All seems to be working, no power surge, so I am making the usual blog entry.

Well, it stopped raining..

As soon as the sun came up, the little yap-yap reported that Timmy is trapped in the well again.
Having worked full time since I was a kid has made it impossible for me to sleep once the sun is up. I feel like a vampire. I never was a "morning person" but on bright mornings like this one, the sound of increasing traffic outside makes me panic as if I'm late for work.
I may have been a cattle rancher in a past life. In the old movies, they were always up at the crack of dawn.

It is cute, but...

I have neighbors who are a couple with a cute little dog the got recently/ I don't know the name of the breed, but “Yap-yap” would be my guess.
How this little dog produces such a loud noise is a mystery. And what it is yapping at is also an unknown.
I wonder how a creature so annoying could have come into existence.
I was thinking about my friend who was so fed up with car alarms in his neighborhood, he said he was going to design a car alarm seeking missile. I love animals, but this one yapping at imaginary trespassers can have no useful purpose.

Whoopy! I have MS!

I have been told that I have an easy going nature. I have been described as laid back.
In many cases, when a problem arises, I've heard people say, “Don't let it bother you,” or “You can't let it get to you.” But I'll admit, that when something bothers me, it bothers me.
If, for instance, it starts raining, I find a place where I can be sheltered, or use an umbrella. Because the falling rain bothers me.
There is a common expression, “Not smart enough to get out of the rain,” It doesn't mean that there is anything wrong with rain, but I think that most people prefer to be out of the falling rain.
In a similar way, pain is something most people try to avoid. It is there to indicate that something is wrong, and should be addressed and remedied.
For the last five years, I have been dealing with multiple sclerosis. In order to do the things I have to do, like shower, shave, or eat, I have, to some extent, ignored the fatigue and uncoordination, and tried to go along as I would before these things started to interfere with my performance. But it does bother me.
“Oh, someone cut my arm off? No problem, I won't let it bother me,”
This is what I mean, there are times when you are supposed to be bothered by something. If there is nothing I can do about a problem, I don't just ignore it, because usually it is something that bothers me.
I feel bad if my condition worries others, but I can't do what some people have grown to expect me to do. If it bothers them, how do they think I feel about it?
As a young kid I remember doctors saying “You will feel some discomfort” as they began to administer an inoculation. Afterward, I thought,”Discomfort?! That's PAIN!
One of the first neurological problems I got was peripheral neuropathy. Now, that is discomfort. It felt like I was getting athlete’s foot. But after using all the over the counter medications for a month, I went to a doctor. She could see no fungus, or any other reason for the discomfort.
The doctor asked if I drink alcohol. I told her that I brew ale as a hobby, and she concluded that the alcohol was the cause of a loss of myelin in my peripheral nerves.
The jobs I have had have exposed me to many things which can cause myelin loss, but after being tested for any of these things in my blood, they found none of the suspected chemicals or pathogens.
So I have just tried to ignore the discomfort with some success. But in 2002, I started having bouts of double vision, A neurologist suspected that it could be multiple sclerosis, and had me start a series of MRI scans to see if there was the pattern of myelin loss associated with MS.
The first scans were done at three month intervals, and were all inconclusive until, in 2005, they were able to see the results that indicate MS.
The months prior to the diagnosis had me nearly convinced that I was losing my mind. With all the doctors and medical specialists in Boston, it was hard to believe that it took so long to just get a diagnosis.
Strangely, it was a relief to get a definite diagnosis.
“Yay, it IS MS!”

Coincidence?

How is it that something as frustrating as a bad video game is played on a thing called a console?

:20 AMAugust 17 at

I can't believe I'm awake, maybe I'm not. Actually, I know I'm not. Gotta get some coffee, I hate this waking up thing, but it beats the alternative. Multiple sclerosis makes waking up harder. The other day, a friend of mine said, "I imagine that even a single sclerosis would be bad." I guess he's right.

What is the right way to say this?

    It seems that lately I often say just the wrong thing. "Sticking one's foot in one's mouth" is especially stupid if you also have, as I do, the tendency to "shoot yourself in the foot."

--
JFC

Mental Gridlock

Today I am in a thought mode wherein I have so many great ideas, that there is what amounts to a traffic jam and the attention I pay to one idea gets usurped by another, canceling out the first one. Oddly, I have felt it difficult to wake up fully at the same time.
Is it that there are too many thoughts, or too few complete ones? I think it is both. And when I stated to sit down and write a blog entry, as soon as I am ready to go on-line and post something, I have to wait for my anti virus software to finish scanning the computer because it slows down everything else while it scans. It is an appropriate analojavascript:void(0)gy for the way my mind is today.

Just Reality

   As I go through my daily routine, I am trying to learn how to improve myself. Only recently I have noticed that I have a tendency to feel sorry for myself, especially now that I have multiple sclerosis. And this self pity is changing into a state wherein I feel more sorry about myself than sorry for myself.

   Almost all of what I have gotten out of life so far, I tried to earn. But it occurs to me that most of what I have is due to luck. I have been fortunate to have known good people who have shared their lives and even their wealth with me. It is shocking when I realize how little I have learned from their example.

   Yes, it is luck that I have. I wish I had learned to listen more. If I have learned anything, it is that my luck is something I have come to expect, but now I realize how much was given to me by others, not gained through my own work.

   I have to amend this. I feel ashamed of my ignorance and arrogance. I have my work cut out for me.

--
JFC

On August 15th, the company I worked for is having their annual picnic. It is an all you can eat lobster feast, with the usual burgers and hot dogs for those who don't want lobster, and salads and cold drinks.
It takes place in a picturesque place in Maine where the president of the company has a beautiful house with a big yard/
The first year I went to this event, it was a foggy day, and you could hear the fog horn come from the light house down on the coast/ It was charming.
Since I came down with multiple sclerosis, I have not been working, but I get an invitation to the picnic, as do other alumni and their families. It was the nicest job I have had, and the friendliest group of coworkers as well.
The president's daughter is somebody I have known since I was in second grade, she has always been like a sister to me. The whole family are some of the friendliest people I have known, I wish I could work at that company for ever.
I am so excited about the picnic, I have been thinking about it for a solid two days.

Too much exposure

A woman on a trolley in Boston was leaning over and accidentally exposed her breasts and was photographed by a man who was sitting there and happened to have a camera. The woman told a transit cop who arrested the guy. In court, the defense argued that taking a picture of such a thing did not constitute a crime.
What I wonder is how the defense never mentioned indecent exposure which, I always thought was considered a crime. If in a public place a woman was exposed long enough for someone to take a photo of her bare breast, why are they overlooking that?

My attempt at writing

I have recently started writing a memoir, but today, I was having some thoughts about possibly writing a novel. Maybe a spy novel, or a mystery. I'll see how it evolves, but for now, it is still a memoir.

How this chapter will begin

As I wrote the request to my old friend, I realized how it all sounded like one of those email scams from Nigeria. But the phone call I had with him earlier confirmed that he knew what the situation was, and how important it is to keep the assets “invisible” for now.
And I need this to be someplace where I would not compromise my own security. With my memory being what it isn't anymore, it is a distinct possibility that I would use it for a purpose that should wait until I have a better idea of the risks I will be facing in the future. And the fact that nobody knows what these risks will be, underscores the need for some outside, third party to help oversee the transaction.

I guess what I am trying to say, but am unable to write, is that the weather is only barely tolerable. Yeah, that's it.

Heat and Humility

    I think the weather here is so hot and humid, that it have been saying that it's unbearable. The thought occurred to me that it is only bearable if I am able to take off any unnecessary clothing. And, that being the case, I would say that the weather is bare-able. It can only be tolerated if I am bare.

--
JFC

The July 8th Grem;in battle

In the middle of the night last night, I decided to try once again to get my computer to connect to the wireless network, and, possibly due to the slight reprieve in the high temperature, it worked. It may also have been the six “detections” that my anti virus software found in the afternoon.
As I said prayers before bed, I counted blessings, and was able to find peace of mind. Which came first? I don't know if coming to grips with the frustration is what allowed me to cure my cyber-woes, or maybe the triumph over the gremlins gave me the peace I needed.
But several re-starts, and resetting the wireless router settings, it finally let me connect. So, at three in the morning, I responded to the great build up of email in my in box, and with the air temperature and humidity down, I slept well enough to feel refreshed upon waking up.

Chillin' on July 5th

In the heat we're experiencing in Boston today, I am sitting in the relative comfort of my air conditioned room listening to music. It is expected to get so hot, I am going to avoid leaving my room.
After sweating through yesterday, a shower this morning felt like heaven.
I think people are a bit more conservative with July fourth fireworks. As a kid, the use of fireworks was an all week ritual. And in those days, they had M80s! Maybe it is just the 9-11 influence, but, as long as it is quieter, I'll take it!

“Life is but a dream”

It is when it seems that life is but a dream that I get nervous. I prefer to have clear, conscious thought, that occurs in a linear progression which I can reference wit memory.
The phrase, “Life is but a dream” from the old “Row Row Row Your Boat” song has a pleasant meaning, that is why you row merrily down the stream. But if while rowing, I was of the opinion that it was all just a dream, I would be likely to suspect that something was amiss, and I for one, would not find it pleasant.
My desk top computer has been acting strange, and it took a lot of re-configuring to get it working properly. When it seemed to change on it's own volition, I started to see similarity to the way my mind is in the MS addled condition it is in.
No, life is not a dream, and when it becomes too surreal, I am inclined to define it as a nightmare, not just a dream.
Now, I re-configured my computer, and slept well knowing I won that wrestling match. Today I needed to examine the philosophical questions I was presented with:
My email was not working, but I could go on-line for any other reason. My anti virus software was fine, and found no virus.
Cycling the power, I noticed that my machine was not connecting to the wireless router. In fact, once it was connected, I could not get it to disconnect.
After reading on gmail's web site that it recommended several web browsers that work better with their software, I downloaded Fire Fox, and re-started, and somehow, all the problems went away. And I feel like I can still fix such things when I need to.

OK, I spent a long day re-vamping my computer, and I have it working as I want it to. I am Impressed, considering my own ineptitude, and the extent of the computer corruption.
Honestly,I'm impressed with the fact that I did this. I mean, I'm totally whacked!.
OK, I am still learning new things, but losing things that I thought were innate traits!

Computer contortionism

After a bit of incantations and mental acrobatics, I got my email program to work again. And, as is always the case, I can't determine what caused the odd behavior in the first place. The lurking suspicion that it was something I did myself is infuriating, but, for now, it works.

Inbox pronlem!

For the second day, I am having a pronlem with accassing my gmail inbox. As it is a web-based email site, I can't imagine what the problem is. It looks like another morning may have to be invested in fixing it.

As I try to check my gmail inbox, I get a message saying:
Internet Explorer cannot display the webpage
I can access other websites, just not my gmail inbox!
I did have to fool with the wireless network connection this morning, but that seems to happen from time to time, and I get it going again, but the only thing that doesn't work now is gmail!

Just feeling low, I guess...

I used to have a significant other, and while they are still significant to me, I feel like I have become the insignificant other.

I just had brunch with my best friend, Lisa! I had a tomato and mozzarella sandwich on baguette. I love those. I wish I still had my own kitchen, and could make dinner for my friends. Next time I'm rich, I'll have to find a way to have an apartment like I used to have.

I must really be a nerd

Last week, I couldn't even spell blogger, now, I are one!

The Grapefruit Prohibition

In the past year I was having pain shooting through the right side of my lower jaw which I assumed was a dental problem, though it was not affected by hot or cold food or drink. The pain would occur and was excruciating! But, if I kept my mouth still, it subsided. So for days, I avoided eating, and even speaking. After a few days, I couldn't take it because I had to eat, drink, and speak. So, when it hit again one morning, I went to the emergency room at a local hospital.
The doctor was an extremely attractive woman who I thought was too young to be a doctor. She looked at my teeth, touched my face in different areas, and walked over to a computer where she did some searches at several web sites. She returned to me and explained that I have trigeminal neuralgia. The bundle of nerved that runs from the brain splits in three and the three branches comprise the sensory and motor nerves in the face.
She gave me a prescription and I thanked her for seeing me on a busy, weekend morning.
I was able to get the medication later that day, and was greatly relieved when the pain stopped occurring. I have taken this medication two times a day since, but, the neurologist at my MS clinic recently changed their supplier for this medication and, as I read the bright yellow warnings on the bottle this morning, it said not to have grape fruit or grapefruit juice.
I had not ever heard of grapefruit being something to avoid! (What will I do NOW?) Seriously, on this hot, humid day, thinking so much about grapefruit juice makes me really want some.

What has begun

The original Big Bang produced the Universe, the violent volcanic Earth with immense heat and pressure produced diamonds, and molten rock and poisonous gasses, sprouted Life, which yielded Mankind who must harbor Love.

Angry answers to well meaning questions

I get phone calls from a service that was part of the health insurance I had at my last job. It is a health management service for people with chronic illness. They need a monthly update for their records. They ask about medications and daily dosages thereof. And if I am seeing new doctors. They ask if I have depression, or thoughts of suicide. After the questions, they ask me to rate their helpfulness on a scale of one to ten. It can take up to five or ten minutes each month. It is free, and they are able to help me with finding resources if I need advice concerning my health.
The pharmaceutical companies that manufacture the medications I take also call me with such questions update their quality control.
Sometimes I am a bit tired of the monthly questionnaires, especially if they call when I am eating, or in the morning while I am likely to be groggy.
On one such morning call, when they got to the question about thoughts of suicide, I was frustrated by the interruption of my sleep, and, in my irritation, I asked,
“How is it that you always ask about thoughts of suicide, but never whether I have thoughts of homicide?”
I knew I was being sarcastic, and that I was being recorded, so I apologized, but I honestly think that, if they know I am ill, and they know it is with MS, my question was legitimate.
I decided to put it into a comedy routine, and leave the it at that.

Ignore the sound of footsteps, I'm following myself.

I see that I somehow listed myself as following myself! Well, I may "find myself" after all!

People to keep me company! Wow!

Today, I looked at my blog page, and found that there is a person who reads what I write, and that made me feel good. So I sent a request to be friends. Like facebook, this blog site will send my request, and inform me through my email what the answer I get is!
That's cool! I am isolated with MS, and I love the idea that I may find real people to communicate with!

The Spirit of Interdependence

I spoke with a friend last night who said some things about which we disagreed. But one of the things that I love about this friend is that we are of such vastly different opinion on many things, and that we always knew that it gave each of a us a wider scope, and more to learn from and work with. If a person is able to explore, and consider new ways of seeing things, there is a greater chance to renovate and improve an existing paradigm.
Both, one's own circumstance, and the circumstances of the surrounding environment, can be adjusted to fit together in a more harmonious way that broadens and strengthens, nourishing the individual, and the environment.

I used to wear a button that had the words, “I Should of stood in bed” printed on it in small, uninteresting, lower case lettering. I particularly liked it because it was so grammaticaly incorect. It truly expressed my general attitude.

For the last month or so, I've been writing a memoir. Unfortunately, I was told to check out a memoir called, “Running With Scissors” by Austen Burroughs to get an idea of how someone else approached writing one. Unfortunate because I found the story irritating. But it seems that an author will publish disturbing things because people tend to buy stories that are so.
I am also dealing with multiple sclerosis, and the various treatments associated with it. I have enough drama in my real life, and don't need more from someone else's true, but twisted tale of depressing memories.
I have never understood why people like horror movies for the same reason, I have enough of my own in my real life to spend money to see fictional horror. I just never found it entertaining!
Mysteries are fun, and I have had them in my real life. But I personally would prefer to write my happy memories.

Free thinking

I took a political science course in college, and the professor was talking about the way that the military control people with a thing called thought reform, where everyone dresses the same and eats the same food at the same time as everyone else. They have people march in formation and even sleep at the same time each day. It makes the soldiers work well as a team.
The professor said that political organization does the same thing, even having a common lingo to reinforce unity. The ones who don’t conform are punished, and everyone has some kind of work to keep them busy. This keeps them from thinking as an individual.
I realized as the professor spoke, that it described the way I was being indoctrinated into college!
I asked the professor, "What is the difference between thought reform, and brain washing?"
"Well, it's a fine political line where, if you like what is being done, it's thought reform. If you don't like it, it's brain washing."

So I quit the class and took English instead.

6-22-2010

 

Yesterday I went with my brother to the pharmacy to get a prescription filled. About a week ago, I ran out of the narcolepsy medication I've been on for years. I contacted the MS clinic, and they sent me a prescription for something I didn't recognize. So I went to the pharmacy I use, and they told me it would cost $50.00, but they had none in stock, and to try again on Thursday.

 I had to pick a prescription at the pharmacy down the street from where I live, and when I went to get that, I asked them if they carried this other stuff. They said they did, so I showed them the prescription I had, and they said it would take 10 minutes, so I went and had a seat while I waited. They came back, handed me the pills, and charged me $5.00. (COOL!)

I woke up this morning and took a 20 mg pill and by the time I had coffee ready I was feeling better than I have in years!

So I did the crossword and sat on the front stairs,

 I hope this lasts!

The co-pay for the stuff I ran out of is $80.00 a month! If I can just take this new stuff instead, that's a huge bonus.

Jeez, I may even shave, I feel so good!

--
JFC

6-14-2010

The cognitive effects of MS are not something I expected. It wasn't something I had heard much about as I have been developing this condition. There has been lots of literature available at the MS clinic I have been going to, and the pharmaceutical companies send tons of information to anyone being treated for the disease,
I feel like I am finally able to realize the implications of the arguments put fourth by Descartes. With actual deterioration of both sensory and motor nerves, my ability to distinguish the difference between conscious thought and dreams is real and palpable! At least I think it is!
I did some work for a company that sold esoteric electronics to universities, medical, and military institutions for some years. One of our customers was the Naval Research Laboratory.
I used to laugh to myself as I thought about the book I had read titled "Wittgenstein’s Poker", a true story about a group of famous philosophers known as the Vienna Circle. They had all witnessed the events of an evening they spent together during which there were some heated arguments. Later they each wrote their individual account of what transpired.
Amazingly, no two of the group remembered the what transpired in the same way, and some even outright contradicted others' recollections!
As I said, this piece of literature, I started to refer to as the "Navel Research Laboratory".

The title, "forever endeavor" was the name of a band I was in with some old friends in 1983. We have recently started to convert all our old, 20 something year old tapes to WAV files. We expect to be posting that stuff somewhwere when we know more of the copyright laws.

A few of my last posts are in huge font size. The reason is that I have optic neuritis, an added bonus to the mu;tiple sclerosisI have had for about 5 years. As a result, I am losing my eyesight! MS also wreaks havoc with my motor nerves, and I have trouble writing, typing, and even simple things like buttoning my shirt and playing my guitar. Tieing my shoes is surprisingly difficult.
I haven't forgotten how to breathe yet, and expect to continue doing so for as long as I can. (I'll live forever, if it KILLS me!)

navel research

 

I was diagnosed with multiple sclerosis in 2005, though I had been feeling early symptoms since 2003. MS is a disease which has no known cause, and they don't know the cure.

I have found a facebook group called "MS Awareness Everyday" which is a place for people who are affected by MS to share and learn from experiences of other "MSers".

Everyday, an administrator provides a 'Topic of the day" question for people to respond to in order to get conversation begun. Today's question was whether we believe that it is a hereditary condition.

My problem with the question is based on the information I have been given by specialists at several MS centers at several different hospitals. I know that, in the past, when someone died of a disease with such "unknowns" associated with it, the cause of death was often deemed "natural causes" or "complications" due to a known, "pre-existing condition".

Now, who in the world is not in an existing condition at all times? And if a person dies, isn't it always due to some complication of that condition? We may just say that the cause of death was that the person stopped living! Simply by virtue of the pre-existing condition being alive, and the present condition being dead.

As far as the question of heredity is concerned, I have to assume that my living condition is in fact inherited from my parents. Neither on in particular, but both!

I took a philosophy course in college, and I am now faced with another conundrum posed to me as a means of "support".

I'm thinking that, if modern science has no answer to the same question, then mu own navel research will serve only to chase my tail around as I wait for either a cure, or "natural causes" to stop the exercise.

--
JFC

Bass guitar playing in the 1980s

 

One of my favorite things to do in the eighties, was a blues jam. Every Sunday at 4:00 PM, in Somerville, there would be a blues jam at Johnny D's in Davis Square. It would be hosted by a professional band, and they would decide the set list. The audience would be comprised of people who would bring their instruments and, upon entering, sign in with their name, and what instrument they had brought. The hosting band would leave a position for an audience member to or two to fill, the lead singer or guitarist would say to the people on stage, "Shuffle, in G", for instance, the drummer would tap his sticks indicating the tempo, and off they'd go. So you would know what key it will be in, the style, and tempo, and, sometimes the name of the song.

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JFC

Cool, it works!

Well, entries by email works great!

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JFC

First attempt

This is my first attempt to make an entry by email.

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JFC

I had been a trumpet player in school when I was 9 years old and I had a friend named Nate who played the tenor sax. On weekends, we would meet at his house and play our instruments for fun. Nate's family lived in a big house built out of pudding stone near the top of the hill on the street my family lived on. Nate's father played piano and would play with us sometimes. Nate's dad had a style that reminded me of Ramsey Louis, one of my father's favorite jazz pianists. I used to listen to my father's records a lot, and became familiar with them as I listened over the years.
Nate and I had a friend who lived nearby who had a drum set, and one day, we started a little quartet. For weeks we did this and one day, Nate's father said that what we could really use was a bass player.
I had a guitar, but it was a really cheap one, and I was not good at it. We were just kids, and eventually we forgot about trying to keep the band together.
It was a few years later when I was at a yard sale and there was an electric bass guitar for sale for $10.00. I had some money from summer jobs that I saved up, and I bought the bass.
I kept fooling around with the cheap six string guitar and had taught myself some chords. Once that happened, I didn’t play my trumpet much anymore. Though I was in the “All Town” band in high school. That was comprised of young musicians from all the schools in Brookline.
I wasn't happy with that band, the teacher who ran it was a person who did the sheet music arrangements for Carl Fisher, a place that provided sheet music for all the schools in Brookline and probably all of Boston. One of the prerequisites of playing in all town band was that we had to be in the marching band which played at the high school football games and memorial day parades. I think I made it through one parade, and quit.
I was not a good student, and was always in trouble for cutting classes in high school.

June 10 2010

It seems that I can no longer cut entries from my text documents and paste them hare. I've done it before, I don't know what has changed. I'll look nto it.

June 1202010

Waiting for Wednesday

June 11, 2010

This morning was one that found me waking up in an irritable mood. It seems that there is a two week period every month where I have no money to work with. The social security just isn't enough to keep up with everything. I am on social security disability insurance because I have MS. So I am only allowed to make a certain amount of money per month. But the cost of my insurance and medications change. The Social Security administration put me on Medicare, which they do automatically after a predetermined period of time. Medicare offers several prescription drug plans which all are more expensive than the health insurance offered by the state I live in.
After searching through all the different plans, I ended up opting for the AARP medicare package, (and I'm only 45 years old!) which offered no prescription drug assistance that I qualify for. They also don't list my primary care physician on their plan, so I have to go make appointments at the closest Dr.'s offices they do list, and see which one I can get assigned to me.
The doctor I had for 5 yaers has his office about two blocks from my house. Any of the ones I will have to change over to will require some travel. Not much, but with MS, walking is dangerous, and driving is out of the question as I don't trust my vision.
I sometimes feel like the way things work, (or don't work,) is as if some specialist looks at your situation and says, " OK, you have MS, we'll cut your income almost completely, then we'll charge you double for what you get in the meantime. Now, after you fill out these reams of applications, and jump through these flaming hoops, we'll give you something that may help with the symptoms, it may be a placebo, but we need to see if that works before trying the actual medication. Just sign here, and pay the copayment at the desk. Have a nice day."

Yeaterday I tried to post some of the memoir I've been writing but I wasn't able to copy and past some things I had writen earlier that morning! When I posted my first entry, I noticed the same thing. Today I will try to figure it out, I am new to blogging, and blogger in general.

Forever Endeavor

Dumb luck

Some things just come easily for me, like bills, multiple sclerosis, and, thank God, a sense of humor that allows me to keep an optimistic outlook.

Social-obscurity

Who am I?

I was born in 1965 in Brighton, Massachusetts, a happy child, the second of three brothers, each born one year apart. We lived in a house owned by my grandparents on my mother’s side. When I was two years old, we moved to Brookline. We lived on the first floor of a triple-decker house on Boylston Street. Throughout the 1960s and 1970s, my father worked as a machinist in Natick, about twenty miles west on Route 9. I remember seeing him hitchhiking to work on days when the car was broken down.

My father was only twenty-one when he and my mother were married. At the age of twenty-three, and with three kids to feed, he became over worked and depressed. Unable to cope with all the sudden responsibility, he developed a drinking problem, and as the property value rose in Brookline, he had trouble earning enough to stay in the neighborhood. So we moved into a federally subsidized housing project in the predominantly Irish Catholic slum known as Whiskey Point. As the Irish came to Boston in several waves to find work, many worked in Boston, and lived in The Point.

There was a lot of tension between the rich neighbors, and the Point kids, and even though I was only about five years old, I could see that I was being treated as an outsider because we came from the Chestnut Hill area. I can remember trying to join in as we sang songs on the school bus. I figured I would fit in better if I adopted the ways of the Point Kids.

“ Oh we’re the boys from Whiskey Point, we’re never very clean,
We never wash our hands or face; we never wash our knees,
We hang around the corner, a’spittin’ at the Jews,
Oh we’re the boys from Whiskey point, a’ who da hell are yous?”

This old song was probably written in the 1800s, when the Catholics were just getting established as a community, and were building lots of churches. There were more than a few churches and synagogues burned down in those days. I guess the bigoted sentiment carried over into the 1970s.

I had several Jewish friends though, and was secretly ashamed as I joined the Point kids in the anthem. But I believed that the way to gain respect among these guys was to be meaner and tougher than the next guy. I had my hands full for the first four years or so, winning fights after school, publicly humiliating the bullies, but eventually, the beatings ceased. I guess I was getting pretty good at defending myself. Eventually, I could be seen with anyone I cared to without rear of reprisal. I even managed to get some of the “nerds” accepted into the fold.

In fifth grade, I was put into what was known as an “open” classroom. There was no assigned seating; in fact, we all sat on the rug that was at one end of the room. The teacher would tell us what kind of project we would be working on, and then we would be free to go wherever we felt comfortable to do our work. Roberta Snow was our teacher, but she let us call her Bobbie. I remember thinking that the school year would be easier than the old fashioned, structured classes I had been in before. Hippies were running this class, I thought, and we would be able to get away with all kinds of pranks and stunts.
Soon I had befriended the most outrageous kid in the class, Chris Guttmacher. He had long hair and his jeans were always tattered and hanging down low. Chris was more concerned with comfort than fashion. Most of us kids in The Point were into the latest music, Elton John’s “The Bitch is Back,” or whichever disco was being hyped on WRKO, radio. Chris had somehow found out about “Acid Rock,” as it was often called back then. Emerson Lake And Palmer, or The Who, or Aerosmith. He listened to WBCN when Charles Laquidera was shocking the conservative listeners with his hatred of authority and conventional thinking. With Chris’s propensity for saying exactly what was on his mind, and vast repertoire of subversive slogans, he found himself in trouble with the school and we were often in the office to discuss whatever transgression we had committed with the principal. I was usually impressed with the style in which he would enrage the teachers. He was much more clever than I was, and this mattered a great deal in the competitive world of school. I had always been the class wise ass until I got Chris onto the Point Kid’s “cool” list, and I felt like I could learn a bit from watching him.

Chris’s father was a psychiatrist, which most of the Point Kids found to be ironic, as Chris was not considered “normal” by the mostly Irish though-guy part of the class. But his father made sure that there would be no stifling of his son’s freedom of expression.

I remember the day Chris swore about something during lunch, and Mrs. Regalino, “the Italian with a little nose,” as Chris used to call her, over heard it. Mrs. Regalino was not liberal, by any means, and we all resented her disciplinary style. “He just doesn’t know when to quit!” she said. To which Chris replied, “ Neither do my parents, maybe its hereditary.”
They called in his parents for a conference, and for the rest of the year we had a graffiti board on the wall on which we could write whatever we wanted. It was supposed to provide us with a place to vent our frustrations without disrupting class. When it got too full to write on, we covered It over with paper, and started a new one For the first few days, it was filled with angry writing, mostly for shock value: “Smoke Pot,” “Mealy Sucks,” the ubiquitous “fuck you,” but as we all shared in the experience, the writing became more meaningful, more relevant to what we all dealt with as a group. Chris was so smart and funny in some of his social commentary and entries that nobody made fun of Jews or nerds for the rest of the year. Chris suddenly became a sort of leader. We couldn’t wait to see what he would write next. He could express our feelings of early adolescence without hurting anyone’s feelings. We watched as Chris wrote expressions like, “Pimples, blackheads, warts, and welts,” or “Subvert the dominant Paradigm” or just “I’ve got angst in my pangst.”

He would just write the thoughts without any worries about whether anyone else would understand it, or even read it at all. Interestingly, we all got the idea as it usually connected to some shared experience we were going through. And soon everyone tried their hand at it.
A wave of free speech washed over the whole class at this time, and news of the success of the experiment reached the ears of the principal, Mr. Cote. He came in one day to see the board, and was so angry about it that he made us cover up our newfound voices again and agree to “keep it clean” from now on, NO SWEARING!

Mr. Cote was our common enemy and this really united us students, though we did stop the profanity, for the most part.

In the summer, Chris’s family used to housesit for another psychiatrist’s family who lived in Lennox Mass. I wouldn’t see my best friend for a month or so, and it was both a surprise and an honor when one day Chris called from Lennox to ask if I could come out and stay with them for the summer. I assumed His parents were looking for a friend to keep him from being withdrawn and lonely. I remember my father standing beside the car as I got in when Mr. Guttmacher came to our apartment building to pick me up. My folks didn’t want me to invite him in; they were embarrassed by the squalor of the projects. My father seemed so cordial and polite as he was shaking hands with Mr. Guttmacher, thanking him for taking me for the trip. It wasn’t like him at all. He seemed to feel subordinate to the very professional Mr. Guttmacher, and it bothered me to see him acting in an unfamiliar way. I thought my father knew everything, or at least could tell you where to find the answer if there was something he didn’t know.
During whole ride to the Berkshire Mountains, it was silent except when we passed a beautiful scenic vista at which point Mr. G. said, “That’s a sight!” I didn’t know what to say to break the ice, and neither, apparently did he. It surprised me to think that his intervention was responsible for Chris’s unbridled extroversion.

My father got a job at M.I.T. as a technician when I was in seventh grade, and our lives became a little more comfortable. And then, when I was fourteen years old my parents announced that they were going to have another baby. They were overjoyed. In 1979, I had a new baby brother.

My father made a good enough salary to raise four children in Brookline. He had no incentive to go to college because he was working and doing what he thought was the best thing for my brothers and me. I was encouraged to go to college, but at that time in my life, it seemed really important to make money. So as soon as I could, I got a job. I worked at a gas station for a while so that I made a good paycheck to contribute to rent and bills at home. I eventually dropped out of high school and went into the construction trades, working for heating and air conditioning companies. I figured that I would be a professional musician.
I would still run into Chris in the neighborhood and we tried to start a band. Chris was a great drummer and had a drum set in his bedroom, which you could hear all the way down the street as he played along to Thin Lizzie or 10 cc albums at top volume. I did not realize at the time, but Chris was expressing himself as effectively with his drums as he did on the graffiti board, and probably with the same purpose. He had an acoustic guitar and I could pick out melodies and join in. But after a while we seemed to lose the rapport we had always enjoyed. I figured it was due to my being the working stiff character that was my everyday role. I think he was worried that I reverted to the same kind of judgmental views that had kept the Point Kids on the other side of the fence. Eventually, Chris became timid and reserved around me, and I thought that he finally had out grown me intellectually. We stopped getting together soon after that, and drifted apart.

I had been playing the trumpet in the school band for two years by this time, and I found that I could really escape into the world music. A few of the local kids started a jazz band after school at my friend Nate’s house. Nate played the saxophone and his father played the piano. I remember his dad said that I had good tone, and that I could really express myself. I told him that I was not so much expressing myself, but I was expressing everything else to myself. I felt that I really had nothing to say.

But this is the nature of expression. I thought I was playing the music I wanted to hear, and Nate’s father must have shared the same kind of feeling at some point, and recognized it in my music. I was not playing to impress anyone but myself, so I never expected it to mean anything to anyone else. For the listener, music is good only if the person playing it conveys some common emotion through it. If the listener feels it too, then it’s really expressing the sentiment of both the musician and the listener.

I found out that there were other kids who played music when I started high school so I made sure to let people see me around with a guitar. As I suspected, several people, guys mostly, wanted to start bands. I had been playing for three years and even though I had learned on Chris’s right-handed guitar, (I’m left handed,) I had a little repertoire of stuff I had composed. One day there was a jam session up in the Fisher Hill estates hosted by Fred Richardson. He was one of the kids who regularly appeared at these after school jams, but went to a private school. As we assembled in the basement of Fred’s house, I realized that his family was the richest of any I had seen. Fred’s uncle was Elliot Richardson, the Attorney General who was famous for having gone against the direct orders of President Nixon when he refused to fire Archibald Cox, during the Watergate fiasco, in the early 1970s.

I remember Fred’s girlfriend, a cute Jewish girl from Newton named Lisa. She and Fred went to the Commonwealth School, a private school down. I had heard the place referred to as the “pressure trap,” as it was a very demanding school. Lisa was small, with frizzy hair and little round glasses. She would sit there as we tried to learn our set list, sighing visibly to show her disapproval. One day when there was a lull in the noise she said to Fred, “Can we do something else?” I took it personally because I had written almost all our stuff. I said out loud to Fred, “Can’t you keep her out of here when we rehearse?” I was sure the blue-collar language of my lyrics had made her hate me.

We called our band “Forever Endeavor,” and had a little wagon, (“the band wagon,”) that we would load all the equipment into. We played in Harvard Square where I had a job as a “scooper” at Emack and Bolio’s ice cream shop. We’d play for a while and then Larry, the other creative force and guitarist, would take all the equipment back to Fred’s house, and I would be right there ready for work.

One night, Lisa walked into the store. I took her order, and as she handed me her money, she included her phone number. The next day I gave her a call and we got together at my house. I remember her; looking around from the corners of her eyes, visibly nervous, trying to keep me from seeing her disgust and fear she felt within the cinder block walls that I called home. She told me that she and Fred were breaking up and she wanted someone to talk to about it. We had a nice time talking and met again several times, and before long, I fell in love. One night, Lisa said things were over between her and Fred, so I tried to steal a kiss after saying goodbye that night. She let me kiss her, but she shook like a leaf in my arms. I recognized her fear. I had seen it in Chris’s eyes when we first used to run into each other in the school office. I did everything I could to make her feel secure; I didn’t kiss her again for the whole time we dated.

As most of the kids I knew went off to college, Lisa included, I lost track of the more affluent friends and found myself in a hostile world of construction jobs for the next five years or so. I still had musical projects with Larry and would see Fred from time to time. I had found a good job fabricating dust collection systems in Allston for wood working factories all over New England. We would fabricate the system in Boston, and then we would ship the whole thing in pieces to whatever factory had ordered it. We would then take a truck for the week and drive out to the factory where we would install it. It was a tough job as it required lifting the huge, four foot diameter piping and giant fans that suck out all the saw dust from the saws and lathes, and assembling them on-site with a crane and three or four workers. I would come home on weekends and hang out with the old friends that were still around.
I had the good fortune to be allowed to sublet an apartment from a friend of my family who had gone to Germany to attend school. His father was the trustee for the rent-controlled building. It was a three-bedroom apartment, right in Brookline Village, for two hundred bucks a month, and I was taking home a lot more than that. At work, we got fifty-five bucks a week expense money for motel rooms and food when we worked out of state, which was most of the time. I would bring a tent with me in the summer time and camp out in order to keep the expense money. In total, I was taking home about five hundred dollars a week, and I rented one of the rooms in my apartment to any one of my friends who needed it for a hundred dollars a month.

Things were great! I let my beard and hair grow long as I saw no one but factory workers and my old pals, and they knew I was a slob anyway. We would all meet at my place on Saturday night, and cook a big dinner and eat, drink, smoke, and have long discussions about life, politics or music.

It was on one of these Saturdays that the doorbell rang, and I, being drunk and in mid-sentence, let one of the other guys answer the door. I heard a woman’s voice ask for me, which was totally unexpected at that time in my life. My pal John Tescher let her in and directed her to the living room where she stood and tried to pick me out of the crowd. It was Lisa! She couldn’t recognize me with my long hair and beard. I jumped up and said hello. She took my arm and pulled me out to the kitchen where she gave me a long hug which she would not let me loose from. She started crying, so I sat down and she sat on my lap and continued to cry. She said that she was just so happy to be home, and that she didn’t want to separate again.

We had corresponded by mail while she was in school, and I would see her when she was in town. We would go out to a movie or have dinner, but I had no idea she liked me that much. Within a week or two of her return, I proposed, and we were engaged. Her parents went into therapy immediately upon hearing about it.

She was Ivy League educated and Jewish, and I was neither. But we held our ground and dated for the rest of her vacation. Soon she had to return to New Mexico where she was working on a Masters degree in history. But we had plans to get together over the summer.
A few months later, I got laid off from my job as the economy in the late 1980s ravaged the manufacturing industry. Lisa came home for the summer and I got this great idea to go back with her to New Mexico and maybe go to school myself. While she worked for a while here in Boston I set about getting ready for School.

I found that taking my G.E.D. test was quick and easy to get through, So when the time was right, we got all our stuff together and packed it all into a 1974 Volkswagen Beetle that Lisa had bought from some friends in New Mexico and drove across the country to New Mexico. The drama made me fall even more deeply in love.

We got settled in Las Cruces and I enrolled in New Mexico State for a one-year certificate program in Welding Technology. However, I knew that college was going to be more demanding than high school and that I was going to be paying for the tuition myself. So I applied myself as best I could, and with the work ethic I gained in the trades, I was able to give my best effort to my studies. The support and encouragement of instructors gave me the confidence to complete my first year of college in May of 1994, with a 4.0 grade point average. I never felt better in my life. I recognized that what I had gained was not just more knowledge, but a sense of fulfillment and the freedom to explore my potentials in an environment where such pursuits are respected.

I believe that I could not have seen this success had it not been for that fifth grade class and all the lessons I took from that group of Jewish, Irish, Black, Blue-collar, Rich kids that opened themselves up to each other back in 1975.

Lisa and I never got married, I assume there were some things I couldn’t understand that she needed to feel comfortable. Things from her background that I still don’t have, and may never have. But if I had not had her trust and friendship, I don’t think I would have ever gone back to school.

I’ve spent the last few years doing welding and welding inspection jobs, but I feel a need to develop my intellect, and to meet people other than those in the welding trade. So I recently enrolled into school again. I don’t know where I’m going, but I can be sure I won’t be hanging around the corner spittin’ at the Jews.