Chapter Fifteen

ADD-ONS AND SECOND THOUGHTS

MEDITATION

We have all had the experience where we were having an average day, a ho hum day, when someone that we're close to, a boy friend, girl friend, husband, wife, or just a friend comes in with a really good idea. "Let's go to the lake or have a picnic, maybe the park or zoo or somewhere. Let's do something!" We immediately have a surge of energy, born of excitement and anticipation.

I will venture a guess that, if you have Myasthenia Gravis, you have had days that were filled with excitement. These same days are notable because of the lack of MG weakness. A really good day. I refer to these days as a Positive MG day.

I'm sure you have also had days where you were down, gloomy, not really depressed but there was no excitement either. You take your medicine and drag around. MG Weakness seems to haunt you, no matter what you attempt. This is definitely a Negative MG day.

It is easy to assume that we had a good day, filled with excitement, because of the absence of MG and that we had a bad day because of the presence of MG but I believe that the absence of MG is the direct result of the good day that was filled with excitement. That the absence of MG was the direct result of a good mental state on that day and that a lousy state of mind/emotions caused the MG on the bad day. This is an important point. The distinction can be the first subject that you meditate on. Go over your good and bad days and ask yourself "which came first?” The day or the MG! Once you accept the position that your MG follows your mind and emotions the door is open to using meditation as a mean to reduce the MG by improving your mental and emotional state. The mind stimulates ones emotions, makes us excited, gets the juices flowing and provides us with a positive experience, free of MG. The mind also, can work against us and give us a negative day.

All this is a result of my own use and success with an hour of meditation each morning. My primary goal in writing this essay is to convince the reader that meditation is a valuable tool and to encourage them to explore the possibility of using this discipline to improve their lives.

This picture of Good days and Bad days is an important clue to improving the lot of the MG person but up until now he/she is merely "Going with the flow." Whether or not they have a Good, Bad, or in the middle day depends entirely on the faulty thinking that assumes outside forces and influences are to blame.

When dealing with the benefits of Meditation the person with the disease or condition known as Myasthenia Gravis has a distinct advantage over someone who simply wishes to improve their life by using this discipline. The weakness that occurs with this disease becomes a valuable way to gage progress. Success to the MG person results in less and less days filled with weakness. This knowledge, however, should be viewed by the non-MG person as a plus. Here is physical evidence of the value of Meditation! When dealing with the mind and spirit and emotions, physical evidence of any kind is really hard to come by.

Here I have two good questions for anyone who's interested. How much do we control our own minds? How much are our minds controlled by our environment?

Answered honestly I believe one will find that our minds are pretty much controlled by the forces around us. If we are happy and someone gives us bad news, what are the odds that we can maintain a degree of happiness? Doesn't look good, does it? We accept this state as permanent because we have lived with it all of our life, but is it permanent or can we change it? Can we gain some control over our minds and thereby control our emotions?

If we can control our minds/emotions then we don't have to sit and wait for things to happen. We can control our days, and determine if today will be good or bad. I don't think that I need to tell someone who is in the grip of a decease like MG that the worst part is that very lack of control. Wouldn't it be wonderful to achieve that control? Isn't such a thing worth devoting a great deal of effort and time? Of course you only have my word that this whole thing is valid and I do believe that poses a real problem. No matter your age, you have spent your entire life with your mind being programmed, by your environment, to function in a certain way. That's a lot of programming and now the goal is to change the program. Can't be done in a day-week-month but will require a least a year or two. I find it frustrating trying to convince people, who don't even know me, that they should, on a strangers word alone, hang in there, don't give up, tough it out when the rewards, at first are so small and so few.

Meditation is a form of exercise. Exercise for the mind and not the body but there are many similarities. A person would never start to lift weights and expect to be Mr. America in a week. Improvement is slow and a long range goal. Usually years. The same is true of Meditation. The human animal does, however, need rewards in order to keep going. In the gym one is measured in all directions so that, after a month, some progress can be realized (the reward) and with this progress a desire to continue is produced. We must do the same with Meditation or the effort is doomed from the start.

Pay close attention to the type and degree of weakness in your average day. Also; what is your mood? At work? At home? Are you Draggy, Droopy, Listless? When? How much? For the MG and non-MG person alike this process can be the same. Write it down so that, after a period of time, you can refer back and measure your progress. Play games with your mind so that you create your own reward system. This will become less important as progress is made but the concern here is to get through those first days and weeks when progress is so small and so hard to find.

To remind you, through Meditation and the gaining of a degree of control of the mind we can generate excitement and make the juices flow. This will result in a positive MG day, and put more life in our lives.

What I didn't realize in the beginning, had no way of knowing, was that each one of these positive MG days that is produced in this fashion and put together in a chain of Pos. MG days results in our beginning at a little higher level. When I say little I really mean little. So small that it can't be measured on a daily basis but it will become evident over a longer period of time.

Don't be threatened by the word "Meditation." The dictionary defines it this way:-----a thinking over -- to think over -- to think or reflect upon -- revolve in one's mind -- to ponder, ruminate, reflect.

There are more but those should give you the idea. Nothing very threatening and, in fact, nothing that any of us hasn't done many times without thinking that we might be meditating. The difference here is that, this time, we have a specific goal in mind and it is a very important goal. It will determine how we spend the rest of our lives. Important enough, I think, to devote all the time necessary to achieving it.

Oh yes, another definition of meditation is: solemn reflection on sacred matters as a devotional act." This statement may give some a problem if they think that meditation will, somehow, conflict or compete with their religious beliefs. My answer to that is simple. Meditate on your religious beliefs and thereby strengthen the things that you worry will be weakened or that you feel are threatened.

Religious beliefs are one facet of our lives. It would be foolish to buy a diamond with a single facet. If we consider our life a diamond (It is certainly more precious than a diamond) then we should not be timid when it comes to adding to the beauty of our particular diamond. While religion is one facet, our mind and emotions are another. The practice of meditation simply polishes this facet and makes the whole diamond more beautiful.

Nature has always fascinated me and I sometimes go as far as referring to it as Nature/God. On the one hand that's an attempt to make it more palatable to those who have a problem with the concept of God. Then again, I really have trouble separating the two in my mind. My uncle, Father Al, who was a Catholic priest, had trouble with this and I think a little threatened by it. He saw the possibility that I might give up my religion and go worship a redwood grove. In Father Al's mind a person worshipped God in Church. Worshiping God in nature seemed wrong. The possibility of two separate and distinct facets existing without either threatening the other never came up in our discussions and he is now dead so the opportunity to test the debate is lost. Incidentally the concept of multiple facets existing side by side was discovered during meditation.

I believe, more and more, that all of us should be more proactive when it comes to our health and well being. Leaving everything to the doctors is a lazy and sometimes dangerous thing to do. Dangerous because with this approach we drift with the current thinking that, if we get into trouble the doctor will always be there to help. If we do get sick and find the doctors have little to offer it is then to late. Instead of sitting by and letting the winds of time and chance create who we are we should be busy polishing the facets of our lives. Elbow grease! It is amazing how little physical exercise is required to feel good and yet many people never even go for a walk. The same is true of meditation. Think of it as going for a mental/emotion walk. The rewards far outweigh the effort.

Once one has decided to Meditate, the trick is in finding the reward system that works best for the individual.

When I sit, with coffee, in the mornings I first empty my mind. (Not to difficult before coffee at 6 AM.) The first thoughts after this are usually negative or neutral and I flow with this. As my mind drifts I work toward a fantasy. In the fantasy the negatives are replaced with pure positives. I am the hero and I always win, always succeed. After all, it is my fantasy and I am in complete control. Twenty minutes to a half hour the fantasy starts to fade and is replaced with the project that I happen to be working on at the time. A painting or story or a subject such as this one that occupies my mind. This is relaxed thought with very little structure. It seems, for me, the less structure the better the chance that I find a new thought or a new avenue to go down and develop. Here's the kicker for me. With new thoughts or ideas comes excitement and I have achieved my goal. I can now start my day "up". The negatives of life are still there but are overshadowed by the positives.

To reiterate: A good day should be the result of our mental/emotion state. A good day should reinforce the mental/emotional state that we began the day with. We should never merely hope that our day will be good so that we will be happy. Happiness is too important to leave to chance. Meditation is a means of taking control. Our mental/emotional state is not a result of how good our day was.

Does this always work? No, not always. Sometimes life has lumps and we find ourselves in a real funk. Lower than low and when this happens I have learned to simply flow with it. Oh I keep trying each morning but have found that if I let the fact that I'm in a slump put me in a slump, well, you see where that's going. Make small changes, get a new project, think of a new subject and "Bingo" one morning you find a new positive level again. It has always worked for me.

What I have described is my approach, the thing that works for me. You, the reader, will have to find the approach that will work for you. If it sounds like what I do will work, try it. If it fails then please don't give up. There are real experts in this field and it is up to you to find them. Elbow grease, remember?

DECK

What follows is an example of fantasy. After printing “Beyond the Limits” and attempting to get someone interested, I returned from San Diego with a good case of depression. Below was the type of thinking that occupied me for several weeks. The upswing in my mood evolved slowly, as you will see. Remember there is always a way out of the dumper and meditation is the key. It’s written just as I thought it. No paragraphs, just one big run-on sentence.

You know----- a deck is a marvelous thing—it’s flat and it lets us be outside and it keeps us from getting our feet dirty and we enjoy nature with no rocks to walk around or stumble over. Sometimes I think that God really missed the boat---He should have made the earth flat and---you know--put down some linoleum or something and then we could have just walked around and well----just skated wherever we wanted to go. Wouldn't be any bumps. That's a thought---a world without bumps! Right now I could use a world without bumps. I look out over the back lawn. It's as bleak and dead and burned as my spirits right now. There's my old 58 Ford pick-up. In the past it's been a symbol of hope and good times. Spent a lot of hours in the back country and camping with my family. It's a good truck. It's a symbol. I guess as an artist I look for symbols. Live by them. Hang on to them when I should let go. Good old truck. No windows now, and no windshield wipers and I guess I should fix it up some day. Aw well, maybe----someday. To the left is the woodshed, mostly empty. Doesn't seem to be much fullness in my life. Not even in the woodshed. In the back part is my wanna-be sail boat. Never really made it to a sail boat. A boat that I started to build twenty two years ago and all I have is the hull. Just a shell. It was a dream. I don't know what other people see when they see old things, old broken down weathered things. I wonder some times. All cracked and rotting like an old farm house. Others call these old wrecks "Picturesque" and no one, I mean no one can pass without taking a picture-----but why? I mean I know why I might but why do others feel things that make them take a picture? What do they see---I wonder. I always see dreams. I can go back, back in my mind and see the people before the house was even built and feel the dreams. It's a good warm feeling. It's always Fall and there's a chill breeze and an urgency and they're hauling in lumber. They spent last winter in the cellar covered with raw beams and sod and the dirt sifted down and mixed with their food and every thing was dirty. Not like on my deck right here. Now they're building the house to put all of that in the past. Dreams. There's happiness here because they know this winter will be different--better--above ground. Next year they'll till the land and have chickens and a couple pigs and a cow. Milk, cheese, eggs, pork and once in awhile fried chicken on Sunday. Always on Sunday. Fresh bread and butter from a Mason jar and they were happy. They worked and struggled and were happy because of their struggle and not in spite of it. In the evening they sat by the fire--real close--cause they didn't have R-30 insulation and by the fire were 3 rocks, not touching but near the flames and when they went to bed each kid got a warm rock wrapped in paper and rags placed down by his feet. All night he was warm and breathed cool fresh air and it was better than central heating. They were poor and had little education but they understood much and I look at their houses all broken and rotting with paint gone some twenty years and I think---that was a dream. This is the raw bones of that dream that's gone. Dissolved like the morning mist in the early sun. Why? Well, it was good---a happy time---they had their time. Everyone has their time only some people know how to grab it and others just let it go by. I wonder what people will say I did when I'm no longer around. I hope they say I grabbed on with what strength I had. Didn't just sit and let it go by. I'll think more on that tomorrow.

RELAXATION

ITS USE WITH THE "STICK SHIFT”
AGAINST THE THREAT OF CHOKING AND THE
DIFFICULTY IN SWALLOWING.

I was thinking, last night, that there is no better example of the "Stick Shift" than when dealing with the difficulty MG people have with swallowing and coughing. When I refer to the "stick shift" I'm talking about changing our instincts as opposed to relying on what comes automatically; the program that we are all born with.

Here are two things that seem to be automatic, both being tied to the most powerful instinct that we possess. The instinct to survive. Without this very strong force man would have disappeared from this earth thousands of years ago. Nature, in every form, relies on it to keep going. I emphasize this, not only to show its purpose, but to show how very difficult it is to go against something that exists in a way that is, normally, basic to our very existence. As in many things with MG, what nature had meant as an aid to our survival----- something good to help us-----hurts us.

From my own experience, while eating vegetables such as peas or corn I have from time to time aspirated. Sucked one of the little devils down my wind pipe. This is very easy to do if one has MG because the control over the muscles in the throat becomes less effective as one eats and swallows. The repetition that is necessary to consume an average meal is more than enough to bring on an episode of MG weakness and, if a person is not careful, toward the end of said meal he or she will let some little piece of food slide down the wind pipe. I think every Myasthenic has had this experience.

At first, when I was new to the MG club, I would do what nature told me to do. What my survival instinct dictated. I would aspirate and then:

By this time my cough was so small and worthless that, if I had not dislodged the offending vegie, I would be forced to rest and slowly build up a stronger cough and eventually, after scaring myself, my wife, and anyone else that happened to be present, half to death, I would succeed in clearing my air passage.

The futility of continuing to cough after the first few strong coughs became apparent and it required a different approach. After many episodes I settled on the following:

It required a lot of will power to relax when my survival instinct was saying "Keep coughing-- keep coughing-- keep coughing." Slowly I re-educated this and all my reflex actions to operate in a way that did not end in disaster. The result was a renewed confidence in my ability to handle situations relative to MG. This requires a strong effort against our basic instincts.

By using relaxation, for this purpose, I believe that one is taking advantage of the "rebound effect" that I speak of in the book, Beyond the Limits. I wasn't aware of "rebound" at the time that I started using relaxation in this manner. This also points up the benefit of relaxing before getting very far into MG. This principle is valid in all aspects of MG such as combing ones hair or brushing ones teeth. Don't wait for a full blown episode to relax. Anticipate and beat it to the punch. If experience shows you that after twelve or fourteen strokes with the brush your arm will be very weak, rest your arm after six strokes and then continue with six strokes and rest etc. While this may seem awkward at first it becomes second nature after a few years of thinking in terms of a stick shift.

The same technique is useful when having trouble swallowing.
Instead of

It seems that the protective impulse to continue swallowing or coughing is a force that actually threatens a person with Myasthenia Gravis.

PREDNISONE

In the early years of my experience with MG the use of the drug Prednisone was unknown. Later, with the success that I was having in managing my own condition, I grew further and further from the advice of doctors and was unaware that they were using Prednisone on a more or less routine basis. This is a very strong drug and my understanding is that it replaces certain natural functions of the body. This is the part that concerns me.

Everything in this book involves the stimulation of these same natural body functions and I have the fear that, with the use of Prednisone, this stimulation becomes more and more difficult, if not outright impossible. As I said, I have no experience with Prednisone, and I pray I never will, but reason suggests that the approach of this book and the lessons that I've learned are at odds with the use of this drug.

Meditation may not work to heighten the level of excitement if the drug is being used to do the same thing. If the drug raises the LF then the "Rebound" won't work. Of course, if the drug works it could be said that the MG person doesn't need the "Rebound" effect and the hour of meditation can be done away with completely. It would seem that Prednisone is a short cut to all the things that I have worked so hard to accomplish.

My question is: Considering the side effects for the patient, is it worth it except in the case of actually saving the patients life?

As I see it the Meditation and Rebound are an attempt to return oneself, in a natural way, to the state that was enjoyed before the onset of MG. I haven't achieved 100% but I do enjoy five or six very good hours each day. Most important I have achieved these hours without the fear of side effects.

At this point I will leave it to those of you who are on Prednisone to judge if the short cut and its side effects are preferable to the hard work and self discipline required to achieve the things that I have achieved. If your doctor feels that you truly need this drug and cannot do without it then, maybe, you will have to wait until sometime in the future when you are in at least a partial remission, and with the help of your doctor, can discontinue the use of this drug. Good Luck and please write if you have first hand knowledge of prednisone that you think might interest me.

ALCOHOL

I did not become aware of the real dangers of alcohol until after I had completed this book. It seems that I was lucky in the choices of how much and when I drank. As the saying goes "You win some and you loose some." This time I won one. Doctors advise people with MG to abstain from all alcohol but obviously I was successful in the use of a small amount and even used it in a way that had positive benefits. I have since discovered that if I have a drink while working, no matter how hard or easy the work, the results can be devastating. If, however, I wait until my work day is done and there are no pressures, social or otherwise, I can sit quietly and enjoy a glass of scotch with no ill effects. The key is the phrase “no pressures.” For me the optimum amount is three or four scotches and no more than one in any hour. What would work for others I haven't a clue and I include this information mainly to show that, with MG, there are no absolute rules. Well, maybe one------

IF SOMETHING WORKS--USE IT!_______

Authored by: Clete Gress