Multiple Sclerosis and Penile Neuropathy
by Dan W.

Monday, March 20,2000

When cannabis helped me stop drinking at age 17, after a real fast-track year-and-a-half start, which left me passed-out drunk each and every Friday and Saturday night of the first semester of my freshman year at college, I really didn't see it as "help" or "medicine." I simply thought that I had found something that would get me high that was better than alcohol and didn't leave me hung-over the next morning.

Alcohol would lead me to what I called, "the click". Meaning that something would go "click" in my head, such that I no longer felt the pain and depression that has accompanied me all of my life. After consuming 7 or a dozen Seven & Sevens, I would suddenly feel whole. My mind would clear and I would be able to catch glimpses of what it must be like not to have to walk around all day feeling lower than dog shit. Of course, the fact that I was not able to convey to anybody else these crystal clear thoughts and ideas because I was dead drunk, did serve as an inhibitor to just about any kind of communication, let alone crystal clear stuff.

Then I was introduced to cannabis. And, all of a sudden my world-view changed and cleared. It was as if a powerful and wonderfully benign windshield-wiper-washer was released into my mind's eye. It cleared everything. My perceptions and feelings 180'd from an overview murky with browns and depressing gray textures to a cleansing, bright sunlight which allowed me to see clearly - again, that same click - but now, without any of the hassles of alcohol.

But, of course, my parents found out about my (ab)use, sent me to a horrible psychiatrist whose only knowledge of cannabis came from government handouts. His treatment was, of course, abstinence and quick sign-up at the outpatient clinic of Daytop Village, one of the first established detox corporations in the country. It was run by a guy whose means of getting thru to people was to make them/us scream at each other, at the top of our lungs that, "I AM ANGRY", over and over again, getting louder and louder each time until some kind of catharsis would burst forth, usually in the form of a breakdown into tears, which would then be rewarded with hugs from all, and a pronouncement that you were well on your way to Curedom.

During this period, when I was in my twenties, I began to notice that I would get tremendous (what I called then) "electric shocks" which would wrack my body sometimes for hours at a time. It didn't make sense to me then, but I noticed that whenever I would stop smoking cannabis for more than just a couple of days, these spastic episodes would increase both in quantity and intensity. When I was smoking on a regular basis, I would sometimes go months without experiencing any of these bouts of agony, but never really made any kind of connection in a medical sense to something like multiple sclerosis. Besides, not one of the many doctors I consulted ever came close to ruling out, much less actually diagnosing, my problem as multiple sclerosis. Most of them thought I had very weird symptoms and most thought I should consult with a psychiatrist.

I wasn't diagnosed with it until l996, but had, since about 1980, discovered that by utilizing a pipe to smoke instead of smoking joints, I was able to control the high and intensity to a much more manageable degree. I stopped allowing myself those tokes, which would bring me anywhere near to crossing that proverbial line, past which I knew I could not function normally in the normal, straight world.

On the other hand, when I administered just the right dosage, I found that I not only COULD function normally in the normal, straight world, but I was able to excel!

I found that I could concentrate. I could focus on whatever task was before me. I could communicate clearly and attain sought after goals.

I didn't commit "violent drug crimes". I never hurt anyone. I also didn't feel depressed anymore. I was/am able to function like a normal human being.


Tuesday, March 21, 2000

Thinking about this subject overnight, I can feel myself peeling off layers of thought about my use (not abuse), and what it means to me; how it makes me feel.

There are really several reasons I find cannabis not only helpful, but also essential in my daily life.

The first is its ability to erase my awareness of certain aspects, which arise out of the multiple sclerosis. And, secondly, it provides the only joy I can find.

Still beating around the bush. OK. Here it is.

First the easy part:

I was a child prodigy. Playing Mozart and Bach and Beethoven on the piano at age 3 and a half I also had Perfect Pitch and an excellent sense of musical time. A good sense of time, while not something one normally writes home about, is, nonetheless, an integral aspect of playing and performing any kind of music. Ninety-nine percent of the people walking around on the planet probably have a good sense of time.

The other aspect is something to write home about.

The other aspect is that I had Perfect Pitch.

What that means is that I had this ability to hear any note or groups of notes played together (on an instrument, or simply in my head) and I would be able to tell the names of each and every one of them. Or, I could compose a piece of music in my head and pick any note, sing it aloud, and, of course, it would be the right note.

That is a one-in-a-million occurrence. It was wonderful and awe-inspiring, even for me as a child. I was constantly amazed at what my mind could hear.

The closest I can come to describing what it was like to have perfect pitch, is to think about it in terms of colors. When you see something Red, you never have to stop and think about it, right? You simply don't have to wonder about what color it is you're seeing (unless you're color-blind). Itis simply Red, or it's simply Purple. Red is Red is Red

and Purple is Purple is Purple.

And so it was with musical notes for me. A C is a C is a C. A D flat is a D flat is a D flat. And so on.

At age 3, my dad would have me turn my back to the piano and he would play clusters (groups of 10 or 11 notes or more played at the same time) and I would be able to tell him the names of each and every one of them. Like looking at a painting and being able to name the colors. There was never any question. A C# was a C# and could not sound like a D or any other note, because it was a C#. Period!

And then, one morning about 20 years ago, I was listening to an unfamiliar symphony on the radio and when it was over, I made a mental guess as to the composer and said to myself that the key of the piece was B-flat (a little game I played with myself all my life - and I was never wrong). I got the name of the composer right, but when I heard the announcer state that the symphony was actually in A-flat, not B-flat, I almost dropped dead from shock and disbelief! I never made that kind of mistake. Never! How can you not know the name for the color Red (or G#)? I was devastated. And, as with my sexual problems, there was/is a torturous descent to an almost complete loss of the ability to hear the correct notes; like not being able to see the red or smell the aroma of a rose. And, I grieve for the loss, especially on those days when just a hint of it returns and I can say, Oh yeah. I can hear that F (Green) today. And sadly, within hours, it's gone again.

Now, I could have lived with the consequences of this particular loss and continue playing. But at the same time that I was losing my perfect pitch, I was also beginning to lose my sense of time. In the middle of playing with a group, all of a sudden I would realize that I had turned the beat around (lost the beat) and it was because I had "gone away" for a fraction of a second and when I returned I was still in the same place, but discovered to my horror and shame, that the rest of the band had gotten just a smidge ahead of me (actually, I had gotten behind them). And that's not acceptable in ensemble playing. Everyone has to be on the same exact page or the whole thing collapses.

So, I had to stop playing music at around the age of 35.

And, even that's not the worst thing that the multiple sclerosis has done to me. The worst thing is as follows:

And, the following is so grotesquely horrible, so completely unimaginable as to make me feel, again, like one in a million, only this time it's probably more like one in 1 billion. Let me explain:

I've got what's called a "penile neuropathy." It means that even though everything is still functioning (that's part of the horror - if things didn't operate mechanically, I'd probably be OK, but as it is, I still have a fairly strong libido for a guy my age), I feel nothing beyond my pelvis. I have no sensation of touch or function.

And that's why I smoke.

Because, each day, when I see a woman to whom I am attracted, is simply just another day in which I can't do anything about it. And, it's never going to be any different; it's never going to get better. And, that hurts beyond comprehension. It aches. It pervades every aspect of my being. It depresses me beyond pain. There is no feeling to describe it. There is no help available anywhere, not even other people similarly afflicted with whom I could share my feelings. No one can truly understand what this is like.

So, I smoke pot. It not only alleviates my physical pain from the multiple sclerosis spasms, but it helps me live with this awesome disability.


Wednesday, March 22, 2000

And it's the third day in which I've continued to examine my feelings in regard to cannabis use. And, so far, each day I seem to be able to delve deeper into my understanding of the matter. It's not a very pretty picture.

What's important to understand is that the penile neuropathy didn't just happen overnight. It was a process that took over ten years to go from, gee, that doesn't feel quite right, to, Hey! It's all gone.

And during that ten-year period I have slowly removed and detached myself from friends, family and as much of humanity as I can. I've become misanthropic and especially angry ever since the police stole my garden in September of 1998.

The reason for my detachment is that the sexual aspect of my multiple sclerosis has made me feel subhuman. Every time I see a woman I may be interested in meeting, I have to stop and ask myself, what good would it do to try and get involved with her? What woman in her right mind would be interested in someone with sexual problems such as mine?

And the answer I always return to is: No one would want to be involved with someone with a problem like that.

Cannabis is the only substance, medicine, theory, philosophy, counseling, psychiatry, psychology or whatever, that works for me.

It makes me feel whole. It makes NOW OK. It removes a lot of stress and it gives me the only sense of joy I am able to behold. It keeps the cold world out and leaves a little bit of a flame inside which is me and I'm able to get thru the day. And then I'm able to get thru the night and then it starts all over again.

Without cannabis, I truly believe that I would either be writing this from a jail cell, or not writing it all, due to an early death, probably caused by violence.

So, that's pretty much how cannabis helps me. It allows me to get thru. It allows me to live my life, even if it's sometimes one minute at a time.

Follow-up note:

Dear Dr. Grinspoon,

After a minimal amount of normal hassles with doctors and pharmacists, I am very pleased and gratified to tell you that I am now in possession of one month's supply (60 tabs) of 10mg of Marinol (refills will be written after I can display that I am not going to abuse (sic) what I have been given, which is one 10mg tab taken twice a day.)

Do you know that the cost of just one month's supply is $721.35????

My God, that's twice what one would pay on the black market for a month's supply. My insurance company doesn't have it on their formulary and so all I had to pay was $30.00!! No wonder they don't want it legalized. I wouldn't either. I can't imagine what the markup muAst be, but it must be staggering. And all for a simple weed that can be grown anywhere for free.

Anyway, the Marinol, in combination with the 150mg of nortriptyline and the 10 of Valium -- both taken at bedtime, have me feeling like a human being for the first time ever! I find the effects of the Marinol lasting 5 to 6 hours and could probably find a third pill at mid-day helpful.

But, this is probably as close to good as it's going to get for me on this planet, and I am so very thankful to you for your understanding compassion and your very timely help.

Thank you again, Dr. Grinspoon. I feel honored and blessed to have crossed your path.

Warmest regards,

Dan W.