Beyond The Limits of Myasthenia Gravis!
by Clete Gress
A "Self Portrait of my Life" with Myasthenia!
Sally, a young girl of sixteen, who is a high achiever in school, has the leading role in the school play.
There is the normal amount of anxiety and stress but she handles that perfectly.
Around noon on the day of the performance her boy friend breaks up with her. The resulting DEPRESSION and EMOTIONAL STRESS is devastating and Sally finds it hard to think much less function. She has always been dependable and she knows the play depends heavily on her performance. She would not let them down. She COULD not let them down. She would go on and succeed as she had always done. She was a girl with resolve. She was a girl with guts. She could do whatever she put her mind to.
Sally trips on the stairs leading to the stage. Her toes are dragging and she has a strange expression on her face. She has trouble fixing her eyes on one spot and is vaguely aware that something is not right but this simply strengthens her resolve to push-on. There is the ever present pressure to succeed. As her path becomes more difficult this pressure grows in a way that is not anchored in reality. She is loosing her ability to judge and right now this play has become far more important than it deserves.
Five minutes into the first act Sally's legs will no longer support her and she falls to the stage. She can barely talk and reality has slipped away. She is rushed to the hospital and tested for drug overdose.
What happens next is mostly up to luck. Very few doctors will be able to diagnose MG from the confused and fragmented account that Sally can give. She is frightened and has never experienced anything like this. She has failed for the first time in her life. She still has the determination, however, and it is her determination to overcome that will LOCK her into MYASTHENIA GRAVIS.
On the following page is a graph showing how Sally got into this mess. It all happened to Sally in a single day but the events leading to MG could just as easily take place over the coarse of a week or a month or a year.
I believe if it were possible to diagnose Sally immediately after her first MG experience and if the correct coarse were followed, based on an understanding of the LF and her enhanced ability to communicate mind to muscle, it would be possible to stabilize or reverse her condition. It seems logical but I can not prove, that the longer a person functions under the condition called MG, the longer it may take to achieve remission or control.
If the original cause of this attack, i.e. the boy friend, would walk into the hospital and give Sally a kiss and tell her he loves her, it would remove the depression that is pulling Sally's LF down. Then if the hospital with its equipment and Doctors and Nurses would inspire enough confidence to negate the anxiety that is generated by the disease, Sally could probably walk out of the hospital with no one even knowing she had Myasthenia Gravis. It would be written off as a case of nerves and stress.
What are the chances of this happening? Zero to none for the boy friend but there's a little better chance that the hospital will relieve the anxiety that's caused by the MG.
How did Sally get into this mess anyway? Earlier I said that it takes three things, coming together at the right time, to produce the condition called Myasthenia Gravis. Severe Anxiety—Depression--Stress, a strong Pressure to Perform together with an Enhanced Ability to Communicate Mind to Muscle. Sally's enhanced Ability was developed at age nine when she was hit by a car. The months of recuperating, hours and hours of superhuman effort in therapy, always determined to do what they said probably couldn't be done led to this ability. It also produced a mind-set that said, "I can do anything I put my mind to." The word "FAILURE" was eliminated from her thinking.
Her intense "Pressure to Perform" was mostly self generated and it also came from the support she had received during her recuperation. Her ties to her family had been greatly strengthened and she would not think of disappointing them.
On the surface the "Severe Anxiety-Depression-Stress" doesn't seem to hold up but Sally's left arm had never fully recovered and was a little misshapen. To Sally this had meant that she was not as attractive as the other girls and when Bill had come along she was on cloud Nine! The intensity of joy at having attracted a boy friend was matched only by her depression when she was dumped. The depression was more than intense enough to lower her LF.
At this moment Sally is laying in a hospital bed, her insides eaten up by the loss of Bill.
It doesn't matter how great or serious the causes of the hurt. It’s how serious it is perceived and to Sally this hurt is so monstrous, so big, that she can not talk to anyone about it.
“They wouldn't understand. They would say stupid things like He's just a boy. There is more than one fish in the ocean etc. etc. I would just end up agreeing to get them to shut up so why try.” She thought. “They wouldn't understand! I just don't want to have to explain.”
In fact, Sally wasn't capable of explaining since she didn't understand any of this. It just was, that's all!
The depression and real hurt is holding her LF down and when she tries to function and fails, the anxiety that's generated, further suppresses the LF. When she gives it her all, really tries, as she has always done, she violates the LF and the immune system lowers the LF further, trying to protect her.
The immune-LF system is really a very good system that was designed to keep Sally safe but has been turned back on itself.
Sally must RELAX. She must do many things that are contrary to her nature. She must not try anything beyond the point where MG weakness is experienced. Above all, and this is the hard part, Sally must rid herself of anxiety and that monster that is destroying her from within.
The chances are good that she won't get rid of the hurt that being dumped by Bill caused. The chances are real good that Sally will do just as I did! Block it out!-------Build a wall-chink the cracks-get on with your life!
If only Sally had not developed her Enhanced ability to Communicate Mind to Muscle. When Bill dumped her, she would have been depressed, but, without the ability to violate the LF, she would not have developed MG. She would not have collapsed on stage. She would simply have turned in a very poor performance. Of coarse, if Sally had not developed her Enhanced Ability she would probably be in a wheel chair today. She would not have been able to overcome the very serious damages to her body from the Auto Accident. It was a trade off. Once again survival had won out over safety. You might say that Sally was paying the Piper.
In case you’re wondering if Sally is a real girl, she's not. She's a composite of myself, a girl in Illinois, another in England and a half a dozen men and women.
I found it much easier to discuss Sally than to constantly talk about myself.
The question has come to my mind many times why is MG so selective? Why in one person does it affect the legs and not the arms and in another the arms more than the legs? Why do some have trouble opening their eye lids and others don't?
There is evidence, from my own experience and from talking to others, that leads me to conclude that these areas are preconditioned to the disorder by subsequent occurrences of overriding the LF in that area.
An example would be a runner in the last five seconds of a race. The extreme pressure to perform would stimulate the production of excessive mind to muscle signals that could override the LF. The resulting weakness, after the race is over, due to any suppression of the LF by the Immune System, would be accepted as a normal reaction to a great effort. Since Severe Anxiety-Depression-Stress is not present it would not result in MG. The moment the race was over the person would stop overriding the LF and, with nothing else to keep it down, it would return to normal.
I BELIEVE WHEN THE LF IS OVERRIDDEN, EVEN FOR A SHORT TIME, IT IS WEAKENED AND BECOMES INCREASINGLY SUSCEPTIBLE TO FUTURE VIOLATIONS. The runner is preconditioned to MG in his legs.
Keep in mind the simple fact that he violates his LF from time to time does not in itself put him in danger. The other elements that make up the MG person must also be present.
In my own case I recall many times doing things with my hands and arms that others had tried and failed. I did seem to be able to continue to apply pressure until the job was accomplished. Simple jobs like removing a lid from a jar. Two or three people would try, some bigger and stronger, and would give up. On removing the lid they would usually say, "I loosened it for you." Maybe they did, once or twice, but I find it hard to accept every time. This type of occurrence has happened all of my life.
When I first encountered MG my arms were the first to be affected. Next double vision and then, to a lesser degree, my legs. At this time I thought that I could continue to insist that they work and they had to obey. I had a lot to learn. I was my own worst enemy. The determination that had served me so well now insured that I would lock myself into MG.
In the absence of MG, determination led to better performance. Once the LF is suppressed by severe Anxiety-Depression-Stress and this is met with a determined effort it leads to less or zero performance. The MG person must understand this and reverse his approach. The continuation of the old pattern of behavior leads to MG crises. Determination is still useful as, I would hate to see anyone give up, but the approach must change. Instead of the direct “apply more impulses full steam ahead” approach, the MG person must learn to go backwards in order to go forward. In many cases relaxing and applying fewer impulses will achieve a greater result. This seeming contradiction may explain why so few MG people find their own way out of this condition.
Most of us don't have to think about shifting gears when it comes to our bodies. As healthy people we were born with automatic transmissions that do all the thinking for us. It's built into our design and it's a very good design. I doubt if anyone in Detroit could improve on it.
Sally, however, has just been betrayed by her automatic trans- mission. She wanted to go full speed ahead during the play but, instead, found herself at a dead standstill on the stage. Until Sally improves a great deal she can look forward to the same results every time she relies on her automatic transmission. (Without help it took me, a least, twenty years.)
Sally's best bet is to start thinking in terms of a Stick Shift. When she gets up, in the morning, She must not put her body into gear until her LF has a chance to rise above the level that she will be applying signals. She can, from my experience, help this process a great deal by the use of meditation and fantasy. I think of this as opening the garage door. Obviously if we put it into gear before we open the door the result will be less than we desire.
Sally now has the door open. What next? She puts it into Low and then into Second and now she's in High Gear. Can she go the rest of the day, just driving around like a person with an automatic transmission? As "Al" on "Home Improvement" would say "I don't think so, Tim."
How far Sally can go is determined by the amount of fuel in her tank. After thirty-six years I have almost a full tank and can get through a pretty full day but Sally, at this point, has only a couple of gallons.
All this must be calculated by Sally. How far can she go before she has gone too far and can't get back again. If her gas will run out (MG Weakness) at, say, 60 mile, then it would be foolish to go past the 30 mile mark before turning around and coming home.
Keep in mind, again from my own experience, that if she goes beyond the 60 mile limit at this point in her recovery, she will damage her condition further and tomorrow will only be able to go 30 miles. Her goal should be to stay within her limits. Be active, yes, but stop short of MG weakness.
Sally is a minor so I can't suggest that she take up drinking. Alcohol is the way I found to limit my day but there must be other solutions to this problem and I'm confident that as soon as the medical profession is aware of the need, a dozen solutions will be found.
From the above it is apparent that Sally faces a difficult future. The good news is that, while difficult, Sally can master the skills needed to gain control of her body and her life. It is, after all, not impossible to learn to drive with a Stick Shift!