I've often thought about the number of people, places, and things that are noted and celebrated on our yearly calendars and wondered how nice it would be to have a day of gratefulness. I can even visualize how the whole day would look, the things we would do, the people we would honor and how a day like that could change the energy of the world.... especially since all of us are encouraged to "Go Green." I would hope that it would create a renewed sense of peace, joy, optimism and more importantly a different outlook for the future.
Over the last several months, I have unfortunately heard more negative comments about the latest state of affairs in this country, instead of any recognition of what change needs to take place, or how we are likely to benefit from it in the long run. This unfortunately is the way that most of us see the world. When some change has to occur, we only see it as something being taken away from us, which we don't like...period, and because it requires some action on our part....discipline. And talk about a word that leaves a nasty taste in your mouth......discipline....no not that. That would mean I would have to start doing something different, change my focus, let something go...etc. Can't we all just blink our eyes and it will happen with no work on our part?
Well....you're welcome to try it that way....let me know how it works for you. For me, to in fact see the world and everything around me in a different way, it has to start with being grateful for the things that are right first. And I realize, with many of us who have varying degrees of sickness, this could be an almost impossible task. In fact there could be someone at this moment reading this who is paralyzed and in a wheelchair, or just had their doctor tell them they have cancer and it's likely they won't survive it. So how on earth could I even suggest to them that they search for the good that is left, when it appears they have nothing left to enjoy or be happy about? How on earth could I even say the word discipline to someone like that?
There is no way the old me could have suggested that, because I would be too wrapped up in my own feelings about how they would have no reason to change their way of thinking....they have nothing left....or it would appear that way. Well, that would be no different than me thinking there is no point in me trying to change anything about the energy crisis, the world is in a hole, so why be hopeful or optimistic about it? Again...you could either blink and hope for change without any effort on your part, or just hope it will all disappear.
I suppose I could write about change, and what a gruesome topic that is to many because they are either too lazy to try something different or they just don't care. But for this moment, if I could say or do something that would lift the spirit of someone who feels they have been left for dead because of illness of some kind, or given a death sentence.....then I want to shoot for that. How could any of us compare the inconveniences of this world whether it be a shortage of fuel, high food prices, and being forced to stay home instead of going on vacation, to the really true dilemmas of the world that are most often hidden behind closed doors and have no effect on you personally. I myself can no longer whine and complain about the gas pump, having no money or having to cut back on food items, knowing in my heart that there are far worse things on this earth to experience, and not realize there is much room for gratefulness.
So even if there is not yet a space on the calendar that encourages gratefulness for just one day, I will celebrate it myself. It will be such a life changing experience, that I will be able to carry it over to the next day, and before you know it......I will get up each morning, not complaining about what I don't have, or what I have to endure......but being grateful for all the good things that are in my life. After all, even someone dying of cancer can still enjoy their last week, by recognizing the life they lead and all the memories of love and family they can take with them. Even someone who is paralyzed can see the sun rise, smell the honeysuckle outside the window, and hear a baby laugh. So no matter how bad you think it gets out there, or the changes that you might have to make in your life to make this a better planet in which to live, there is so much to be grateful for. If you are one of the lucky ones.....put on your walking shoes and go for a walk in the park........without fail......you will find gratefulness.
Friday, August 15, 2008
Wednesday, August 13, 2008
Inside My Head
Could be an interesting place to be, inside my head. In fact if you've been reading my blogs for the last couple of months you've done just that. I suppose, that in reality, is what most writers are inviting you to do.....crawl inside their head to see how their mind works......in essence what makes them tick. Sometimes you'll see fear, sometimes you'll see peace, and most likely see someone who is just going through the motions in life, finding her own place and way in which to communicate what she's truly thinking. My thoughts and beliefs are not likely to line up with yours, or anyone else's, but I would hope that if it does anything, it motivates you to be more aware. Aware of what you ask?
Honestly aware of everything. I think society as a whole is so caught up in how to get through next week and next month, or what happened in the past, that we completely forget to pay attention to what is going on in our heads right at this moment. I realized at some point and time that when you are stuck in those places, you are in fact taking up space in your head that could or should be filled only with what's happening at this moment. Maybe that's why I like to write so much because I am completely focused on what is inside my head right now.....not on what was or what could be. I'm aware of the noises around me, the feel of the chair I'm sitting in, the temperature of my body, and what I'm thinking about as I write.
Something that I really notice is that my focus is not anywhere close to my illness. It's as if my mind has taken up whatever energy or effort it takes to feel bad....or be in pain......and decided to use it in another way. Maybe I'm the latest thing in a hybrid human.....or I've embarked upon a whole new way of "being green." For honestly, what goes on inside my head 95% of the time is how I can save energy.......my energy. Most of the time I see myself as a gas tank. You fill it with gas.....the gauge says full....but very soon, especially with gas prices where they are right now, the empty sign starts flashing yellow....which means you are about done. Either you get more gas, or you will be forced to pull over and stop.
That light will only flash for so long, so you have to make a decision about what to do next. If you are lacking money, your car is likely to sit for a while. But bottom line, it's not going another block because the gauge reads EMPTY. So honestly, as odd or stressful as that may seem, it really does force me to live in the moment.....always aware of my tank being full or empty. Maybe later on in the day I can get back out there, and maybe not. Kind of hard to plan for anything, which again....keeps you in the moment. You begin to appreciate what is before you instead of behind or ahead of you.
Honestly this is not a game, a riddle or puzzle for people who are sick, the last thing in the world you need to do is add more stress to the equation. If anything, it's to help find a way in which to cope with living in a world just as you are. We cannot worry or fret about how or why we are sick, or if in fact we will ever get well. I can tell you from experience, as much as you think that will help you.......it won't. If anything it makes life that much harder, because no matter how much time you choose to stay in that frame of mind......it will resolve nothing. Plus, those people around you can clearly see that it's your focus, because you develop a victim mentality.......not an appealing place in which friends want to dwell. They know full well of your illness and your limitations, and don't need to hear about it on a daily basis. This is in fact a hard lesson to learn.....but necessary.
There is a huge difference in sharing your medical information with friends and family, and dwelling on the fact that you have what you have, and making a point of inviting them to your pity party. If you need to say no because you realize you cannot do something or be a part of something, then of course.......there is no need to explain except by saying......sorry...I can't do that. There is absolutely no need to explain why you can't do it, if it's clear in your mind why. What conclusions another person will come to is their own decision and right. That's another good reason for being more aware of what is inside your head. It allows you to truly know what your body is up to and not up to on any given day. You can stop the constant guise of doing something because you think it's what the other person needs or wants you do to......rather be fully aware of your limitations for that day and respond accordingly.
This is not rocket science by any means and really has nothing more to do with except understanding awareness....period. You either want to get inside your head, and experience what is going on at this moment, deciding whether you tank is full or empty, or you'll waste time and energy pondering on things from the past that you cannot change, or on those things in the future that you cannot control. So today, I choose to be inside my head, so I can be more clear about what my body is asking me to do.........step out a bit......or slow down. Doesn't mean I have to like what the body's response is, just like I don't like it when the tank says EMPTY and there is no reserve that day. It just simply means that it's ok to pull over for a while and wait till the light turns green.
Honestly aware of everything. I think society as a whole is so caught up in how to get through next week and next month, or what happened in the past, that we completely forget to pay attention to what is going on in our heads right at this moment. I realized at some point and time that when you are stuck in those places, you are in fact taking up space in your head that could or should be filled only with what's happening at this moment. Maybe that's why I like to write so much because I am completely focused on what is inside my head right now.....not on what was or what could be. I'm aware of the noises around me, the feel of the chair I'm sitting in, the temperature of my body, and what I'm thinking about as I write.
Something that I really notice is that my focus is not anywhere close to my illness. It's as if my mind has taken up whatever energy or effort it takes to feel bad....or be in pain......and decided to use it in another way. Maybe I'm the latest thing in a hybrid human.....or I've embarked upon a whole new way of "being green." For honestly, what goes on inside my head 95% of the time is how I can save energy.......my energy. Most of the time I see myself as a gas tank. You fill it with gas.....the gauge says full....but very soon, especially with gas prices where they are right now, the empty sign starts flashing yellow....which means you are about done. Either you get more gas, or you will be forced to pull over and stop.
That light will only flash for so long, so you have to make a decision about what to do next. If you are lacking money, your car is likely to sit for a while. But bottom line, it's not going another block because the gauge reads EMPTY. So honestly, as odd or stressful as that may seem, it really does force me to live in the moment.....always aware of my tank being full or empty. Maybe later on in the day I can get back out there, and maybe not. Kind of hard to plan for anything, which again....keeps you in the moment. You begin to appreciate what is before you instead of behind or ahead of you.
Honestly this is not a game, a riddle or puzzle for people who are sick, the last thing in the world you need to do is add more stress to the equation. If anything, it's to help find a way in which to cope with living in a world just as you are. We cannot worry or fret about how or why we are sick, or if in fact we will ever get well. I can tell you from experience, as much as you think that will help you.......it won't. If anything it makes life that much harder, because no matter how much time you choose to stay in that frame of mind......it will resolve nothing. Plus, those people around you can clearly see that it's your focus, because you develop a victim mentality.......not an appealing place in which friends want to dwell. They know full well of your illness and your limitations, and don't need to hear about it on a daily basis. This is in fact a hard lesson to learn.....but necessary.
There is a huge difference in sharing your medical information with friends and family, and dwelling on the fact that you have what you have, and making a point of inviting them to your pity party. If you need to say no because you realize you cannot do something or be a part of something, then of course.......there is no need to explain except by saying......sorry...I can't do that. There is absolutely no need to explain why you can't do it, if it's clear in your mind why. What conclusions another person will come to is their own decision and right. That's another good reason for being more aware of what is inside your head. It allows you to truly know what your body is up to and not up to on any given day. You can stop the constant guise of doing something because you think it's what the other person needs or wants you do to......rather be fully aware of your limitations for that day and respond accordingly.
This is not rocket science by any means and really has nothing more to do with except understanding awareness....period. You either want to get inside your head, and experience what is going on at this moment, deciding whether you tank is full or empty, or you'll waste time and energy pondering on things from the past that you cannot change, or on those things in the future that you cannot control. So today, I choose to be inside my head, so I can be more clear about what my body is asking me to do.........step out a bit......or slow down. Doesn't mean I have to like what the body's response is, just like I don't like it when the tank says EMPTY and there is no reserve that day. It just simply means that it's ok to pull over for a while and wait till the light turns green.
Monday, August 11, 2008
Show Me the Money
Well...unless you've seen the movie Jerry McGuire, you won't understand what that phrase means. Actually in this case it has to do with a football player demanding more money from his agent in order to stay with a particular team. For me, it conjures up a much different meaning, and comes out of the mouths of many people who have no idea what it means to be in a position where there's no dollar sign at the end of something you're doing. That in order to find a place in society, you have to be productive in a way that brings an income, so you're not in a position of living off of the government or those who say they work very hard for a living, and resent the fact that their taxes support those who are sick or less able.
Granted I'm sure there are those who, for whatever reason, are determined not to work because of the lack of motivation, education, discipline or intelligence, but I do see that it's an unfair habit for a part of society to place us all in a category of "people who live off the system." Of course these are also the ones that have not been sick a day in their life, and believe that even if they were to become sick, they would somehow still be able to put a dollar sign at the end of whatever they were able to do.
The point is, if you look hard and long enough, you will find there are varying degrees of illness, either physical or emotional, and granted there could be someone right now who could be productive in some way, but has chosen to give up the fight and not try any longer.......what about those of us who fight every day to bring about change in the world in a quiet and unsuspecting way? Unfortunately they live behind the scenes where no one really sees what or how they might be contributing to society. After all in my book......you're being productive if you put a smile on your face when you go out in public. Lives everyday are changed by those unsuspecting, quiet, and seemingly detached individuals, who are in reality struggling just to remain independent in some way.
Maybe this should have been another blog about judging others.....or feeling more empathy for those who can't take care of themselves for whatever reason. The bottom line should be, who has the right to even speculate what is going on in someone elses life and then have the audacity to judge them? Really none of us have the right because we have no clue as to what goes on behind closed doors. Whether someone has given up because they are lacking the ability and skills to go out and work, or they are physically or emotionally ill, most often through no fault of their own and are dependent on others.......wouldn't it help society as a whole if we gave each other the benefit of the doubt? Wouldn't it help if we tried at least for a day to walk in their shoes to see what their life might be like, most often using what energy they have to just take care of their own personal daily needs?
Most often it's not noticed what it takes for a sick person to even hang on to a positive attitude in the midst of their suffering. That is takes every ounce of energy and strength they have to not become a victim of their circumstance, and that what they need more than anything to hang on is recognition and appreciation for that strength, words of encouragement and a true understanding of what it takes to deal with a physical or emotional illness. I often wonder, what these self righteous people, who believe they have all the answers and everyone should follow their lead, would do if they were hit by a truck or diagnosed with cancer? How would they feel then about society saying......Show Me The Money?
Granted I'm sure there are those who, for whatever reason, are determined not to work because of the lack of motivation, education, discipline or intelligence, but I do see that it's an unfair habit for a part of society to place us all in a category of "people who live off the system." Of course these are also the ones that have not been sick a day in their life, and believe that even if they were to become sick, they would somehow still be able to put a dollar sign at the end of whatever they were able to do.
The point is, if you look hard and long enough, you will find there are varying degrees of illness, either physical or emotional, and granted there could be someone right now who could be productive in some way, but has chosen to give up the fight and not try any longer.......what about those of us who fight every day to bring about change in the world in a quiet and unsuspecting way? Unfortunately they live behind the scenes where no one really sees what or how they might be contributing to society. After all in my book......you're being productive if you put a smile on your face when you go out in public. Lives everyday are changed by those unsuspecting, quiet, and seemingly detached individuals, who are in reality struggling just to remain independent in some way.
Maybe this should have been another blog about judging others.....or feeling more empathy for those who can't take care of themselves for whatever reason. The bottom line should be, who has the right to even speculate what is going on in someone elses life and then have the audacity to judge them? Really none of us have the right because we have no clue as to what goes on behind closed doors. Whether someone has given up because they are lacking the ability and skills to go out and work, or they are physically or emotionally ill, most often through no fault of their own and are dependent on others.......wouldn't it help society as a whole if we gave each other the benefit of the doubt? Wouldn't it help if we tried at least for a day to walk in their shoes to see what their life might be like, most often using what energy they have to just take care of their own personal daily needs?
Most often it's not noticed what it takes for a sick person to even hang on to a positive attitude in the midst of their suffering. That is takes every ounce of energy and strength they have to not become a victim of their circumstance, and that what they need more than anything to hang on is recognition and appreciation for that strength, words of encouragement and a true understanding of what it takes to deal with a physical or emotional illness. I often wonder, what these self righteous people, who believe they have all the answers and everyone should follow their lead, would do if they were hit by a truck or diagnosed with cancer? How would they feel then about society saying......Show Me The Money?
Friday, August 8, 2008
A Week in the Life Of
This has been a week of disappointments for me, for I had an opportunity to see many friends and family I hadn't seen for a very long time. Of course as usual, it was due to my not being strong enough to either make the journey or either have the energy that's required just to be "on" for several days. I find there's a big difference in pushing the button "on", and physically being a part of something and actually coming to grips with how long your battery will last. In my case......not more than 20 minutes. And this is not something that is new by any means. This is simply the week in the life of Cindy. Something I have been living for a very long time, and you would think that I'd be used to it......but then there are days.....well.
I think about my acceptance level quite often, and wonder if sometimes I'm still able to play a video of how I think my life should be right now. The video, and dreams oddly enough, are of me strong and full of life.....able to drive, walk, run, dance, go to parties and weddings, work....etc. There are no wheelchairs, canes, chairs in close proximity to me, handicap parking tags or a bed closeby for me to crash in. No limitations whatsoever.....even to the point of me actually making plans to carry out ventures which in reality take, what most people take for granted, energy and strength. But then I catch myself, that is unless someone close to me has called to my attention as to how I plan to play out these great feats of strength. It's as if I'm able to completely ignore my limitations, by looking at this video in my head, believing that it's the way my life should or could look.....but then I remember. Ah...yes.
Keep in mind this is not a place in which to display pity, or playing the role as the victim....nor asking or expecting anyone around me to "fix" this. If anything that is the farthest thing from the truth. If anything at all, it is more about making a connection with those who really don't even have to be sick, but who understand that we all have our crosses to bear....mine just happens to be physical limitations. Yours could be illness, being in debt, having a loved one pass on, the sadness of a divorce, losing your job, frustrations from responsiblities in life, or just being unable to cope with those around you. If there is one thing I've learned in this life, it's that pain is pain, sadness is sadness, and loss is loss, and we all at one time or other reach our limit of how much we think we can take stresswise. All of us have said....."I don't know how much more I can take." There's not a person I've been around who has not said those exact words. So whatever my limitations or frustrations are.....keep in mind that I am fully aware of those that have it worse....much worse......and those who are fairly successful, but still have disappointments in this life.
It's not so important that I go into detail about what a week is like in my life.....but much more important to me that I was able to witness someones elses week. I can very easily rehash why I couldn't connect with friends and family this week and focus on how disappointed I am........and though as I've said before......I'm human and will have my moments of sadness......but it doesn't last long because I'm more interested in redirecting that so it's put to good use. I can either spend my time thinking about what I think my life should look like, and how unfair it is that my week was spent inside being still and quiet......or I can connect with others who are experiencing just as much disappointment or confusion in their own life.
It's important for me also to let go of needing others to completely understand my situation, or to reward me with a medal for trying so hard. I guess all of us to a degree would like some sort of recognition for what we all try to do with our lives.......but in my own journey, I'm trying to be better about understanding instead of being understood, for there are plenty of people out there who could write their own........A Week in the Life Of.
I think about my acceptance level quite often, and wonder if sometimes I'm still able to play a video of how I think my life should be right now. The video, and dreams oddly enough, are of me strong and full of life.....able to drive, walk, run, dance, go to parties and weddings, work....etc. There are no wheelchairs, canes, chairs in close proximity to me, handicap parking tags or a bed closeby for me to crash in. No limitations whatsoever.....even to the point of me actually making plans to carry out ventures which in reality take, what most people take for granted, energy and strength. But then I catch myself, that is unless someone close to me has called to my attention as to how I plan to play out these great feats of strength. It's as if I'm able to completely ignore my limitations, by looking at this video in my head, believing that it's the way my life should or could look.....but then I remember. Ah...yes.
Keep in mind this is not a place in which to display pity, or playing the role as the victim....nor asking or expecting anyone around me to "fix" this. If anything that is the farthest thing from the truth. If anything at all, it is more about making a connection with those who really don't even have to be sick, but who understand that we all have our crosses to bear....mine just happens to be physical limitations. Yours could be illness, being in debt, having a loved one pass on, the sadness of a divorce, losing your job, frustrations from responsiblities in life, or just being unable to cope with those around you. If there is one thing I've learned in this life, it's that pain is pain, sadness is sadness, and loss is loss, and we all at one time or other reach our limit of how much we think we can take stresswise. All of us have said....."I don't know how much more I can take." There's not a person I've been around who has not said those exact words. So whatever my limitations or frustrations are.....keep in mind that I am fully aware of those that have it worse....much worse......and those who are fairly successful, but still have disappointments in this life.
It's not so important that I go into detail about what a week is like in my life.....but much more important to me that I was able to witness someones elses week. I can very easily rehash why I couldn't connect with friends and family this week and focus on how disappointed I am........and though as I've said before......I'm human and will have my moments of sadness......but it doesn't last long because I'm more interested in redirecting that so it's put to good use. I can either spend my time thinking about what I think my life should look like, and how unfair it is that my week was spent inside being still and quiet......or I can connect with others who are experiencing just as much disappointment or confusion in their own life.
It's important for me also to let go of needing others to completely understand my situation, or to reward me with a medal for trying so hard. I guess all of us to a degree would like some sort of recognition for what we all try to do with our lives.......but in my own journey, I'm trying to be better about understanding instead of being understood, for there are plenty of people out there who could write their own........A Week in the Life Of.
Saturday, August 2, 2008
A Different Sort of Life
The blogs have collected over the last few weeks, covering subjects such as how to minimize stress in your life, finding your own space, or learning to embrace you present situation, but I have yet to explain why I started writing this blog. I've been forced, because of an auto immune disease, to spend most of my time at home. This is not something I asked for, or could have ever predicted for my life, but simply my reality. A reality that is so different sometimes than the average person, I might as well be living on another planet, trying to mingle amongst a society that I can only look at from my window, not really be a part of most of the time.
This is not a sob story, nor do I seek pity, but just a driven desire to pass on information that may help those who also have someone in their life suffering from the same disease. For if there is one ongoing theme here, it's not so much the sick person who has to cope with their illness, rather the people around them not understanding their illness. Now the information I pass will specifically relate to my own illness, but just keep in mind that the subject matter is what carries the importance here.
I have been sick now for most of my life, though have been able to craftfully keep it hidden, so as not to disrupt how I'm seen by others. And even though I didn't quite fully understand what was going on with me, or give it a label, the symptoms were still there everyday, whether I paid attention to them or not. I began to suffer in my early 20's, noticing little quirks that after a while couldn't be ignored, and thus began my journey with doctors who would for many many years tell me was either my imagination or that I was suffering from depression. Silly me.....I believed them because after all who was I to question a doctor. But, this is not about doctor bashing here, this is simply as I stated before, a need to pass on information.
I did what I could to have a seemingly normal life. Was married with two children and had the house in the country with a picket fence. The american dream had knocked at my door and I answered it believing that no matter what my body was trying to show me, I could hide it away comfortably in a box and get on with a normal life. Again, if I have any skills at all, it would be those of a magician who could with a wand and puff of smoke, seemingly zap away those daily reminders of something that was not quite right inside me. Whatever it was would have to wait, because I was busy having a wonderful life.
As I grew older I began to experience even more symptoms, that regardless of how hard I tried, I could no longer keep them hidden. They began to take a toll on my abilities as a wife and a mother, and would eventually begin it's path of destruction. I was 40 before I had no choice but to succumb to it's power, because it was far greater than I could take any longer. I had gone back to college, and was working 2 jobs........and simply hit a wall going 100 miles an hour. I finally reached my limit.
With a stretch of road before me of doctors, and several different notions of what I had, I was forced to live a different sort of life. The life of a chronically ill person, which to many people only put a bad taste in their mouth. Again I can only compare it with someone who is living on mars.....different.
I have an auto immune disease called Myasthenia Gravis.....and up until this point I had been able to brush it off until new symptoms arrived that could not be ignored. When your face gets this distorted look, and your voice disappears, it finally becomes clear to others that you are in fact different. Myasthenia Gravis is an autoimmune disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The term literally means "grave muscle weakness." It's caused by a defect in the transmission of nerve impulses to muscles. Where normally there would be communication between the nerve endings and the muscle(that connection usually made with the help of a substance called acetycholine) there is no communication because of the lack of this substance. Antibodies which are produced by the body's own immune system, which normally protect the body from foreign organisms.......mistakenly attack itself.
The result of all this miscommunication is severe muscle weakness in several parts of the body......most specifically the eyes, face, the vocal chord muscles, neck muscles that hold the head up and muscles that control breathing. And if you're lucky like me, it effects most all other muscle groups that literally keep you in a standing position or aid in your ability to do most everything. There are ways in which to deal with some of these symptoms, but there is no cure. No matter what, you are at the mercy of it daily, and either come to grips with it, befriend it and make the changes that are needed in order to cope, or you ball up and hide in a corner somewhere and not live your life.
I myself, though having been living with it for many years, have not given into it and most of the time cope fairly well, but of course I'm only human. Some days are more than I can bear, and find the one word that I use most often ...."no"....tries my patience more than anything. But with its inevitable presence in my life, I can only cope as best I can and realize that it's not really who I am, but just a part of who I am. So I take the parts that are left in my life and try to make a difference in someone elses. I find most of doing that involves helping others de-stress their lives as much as possible.....for there are culprits that live among those with MG. Stress is the worst of them, which is one of those things in life that is almost impossible to get rid of completely. It can come in many forms for those with MG. Extreme heat, most any activity that requires the muscles, and physical as well as emotional stress. And most often, a person with MG usually has other illnesses that come with the territory.....which just adds to the burden.
The granddaddy of them all seems to be the people around you who are clueless about the disease itself and how it effects your body and life. You are not understood because it's not something that people want to see or understand, and most often find more pleasure in watching you, questioning you, and wondering not only why you have this disease, but why you don't handle it in the way they think you should. Some don't even bother to research your illness so they are better equipped to help you deal with it, they just continue to ask you why you can't do this or that, or look at you puzzled when your more obvious symptoms appear wondering what's wrong with you. This only makes you feel even more ostracized.
If more than anything, you learn to surround yourself by people who love you and understand the situation as opposed to constantly questioning how you're dealing with it, including your need to say no. After all, you are in fact, for whatever reason, being asked to live a different sort of life. One that requires a great deal of understanding and acceptance of self and the limitations you are faced with each day..... which is probably the most challenging career on earth. It takes an enormous amount of courage in which to trade a productive successful life for one that is full of the word "no."
This is not a sob story, nor do I seek pity, but just a driven desire to pass on information that may help those who also have someone in their life suffering from the same disease. For if there is one ongoing theme here, it's not so much the sick person who has to cope with their illness, rather the people around them not understanding their illness. Now the information I pass will specifically relate to my own illness, but just keep in mind that the subject matter is what carries the importance here.
I have been sick now for most of my life, though have been able to craftfully keep it hidden, so as not to disrupt how I'm seen by others. And even though I didn't quite fully understand what was going on with me, or give it a label, the symptoms were still there everyday, whether I paid attention to them or not. I began to suffer in my early 20's, noticing little quirks that after a while couldn't be ignored, and thus began my journey with doctors who would for many many years tell me was either my imagination or that I was suffering from depression. Silly me.....I believed them because after all who was I to question a doctor. But, this is not about doctor bashing here, this is simply as I stated before, a need to pass on information.
I did what I could to have a seemingly normal life. Was married with two children and had the house in the country with a picket fence. The american dream had knocked at my door and I answered it believing that no matter what my body was trying to show me, I could hide it away comfortably in a box and get on with a normal life. Again, if I have any skills at all, it would be those of a magician who could with a wand and puff of smoke, seemingly zap away those daily reminders of something that was not quite right inside me. Whatever it was would have to wait, because I was busy having a wonderful life.
As I grew older I began to experience even more symptoms, that regardless of how hard I tried, I could no longer keep them hidden. They began to take a toll on my abilities as a wife and a mother, and would eventually begin it's path of destruction. I was 40 before I had no choice but to succumb to it's power, because it was far greater than I could take any longer. I had gone back to college, and was working 2 jobs........and simply hit a wall going 100 miles an hour. I finally reached my limit.
With a stretch of road before me of doctors, and several different notions of what I had, I was forced to live a different sort of life. The life of a chronically ill person, which to many people only put a bad taste in their mouth. Again I can only compare it with someone who is living on mars.....different.
I have an auto immune disease called Myasthenia Gravis.....and up until this point I had been able to brush it off until new symptoms arrived that could not be ignored. When your face gets this distorted look, and your voice disappears, it finally becomes clear to others that you are in fact different. Myasthenia Gravis is an autoimmune disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The term literally means "grave muscle weakness." It's caused by a defect in the transmission of nerve impulses to muscles. Where normally there would be communication between the nerve endings and the muscle(that connection usually made with the help of a substance called acetycholine) there is no communication because of the lack of this substance. Antibodies which are produced by the body's own immune system, which normally protect the body from foreign organisms.......mistakenly attack itself.
The result of all this miscommunication is severe muscle weakness in several parts of the body......most specifically the eyes, face, the vocal chord muscles, neck muscles that hold the head up and muscles that control breathing. And if you're lucky like me, it effects most all other muscle groups that literally keep you in a standing position or aid in your ability to do most everything. There are ways in which to deal with some of these symptoms, but there is no cure. No matter what, you are at the mercy of it daily, and either come to grips with it, befriend it and make the changes that are needed in order to cope, or you ball up and hide in a corner somewhere and not live your life.
I myself, though having been living with it for many years, have not given into it and most of the time cope fairly well, but of course I'm only human. Some days are more than I can bear, and find the one word that I use most often ...."no"....tries my patience more than anything. But with its inevitable presence in my life, I can only cope as best I can and realize that it's not really who I am, but just a part of who I am. So I take the parts that are left in my life and try to make a difference in someone elses. I find most of doing that involves helping others de-stress their lives as much as possible.....for there are culprits that live among those with MG. Stress is the worst of them, which is one of those things in life that is almost impossible to get rid of completely. It can come in many forms for those with MG. Extreme heat, most any activity that requires the muscles, and physical as well as emotional stress. And most often, a person with MG usually has other illnesses that come with the territory.....which just adds to the burden.
The granddaddy of them all seems to be the people around you who are clueless about the disease itself and how it effects your body and life. You are not understood because it's not something that people want to see or understand, and most often find more pleasure in watching you, questioning you, and wondering not only why you have this disease, but why you don't handle it in the way they think you should. Some don't even bother to research your illness so they are better equipped to help you deal with it, they just continue to ask you why you can't do this or that, or look at you puzzled when your more obvious symptoms appear wondering what's wrong with you. This only makes you feel even more ostracized.
If more than anything, you learn to surround yourself by people who love you and understand the situation as opposed to constantly questioning how you're dealing with it, including your need to say no. After all, you are in fact, for whatever reason, being asked to live a different sort of life. One that requires a great deal of understanding and acceptance of self and the limitations you are faced with each day..... which is probably the most challenging career on earth. It takes an enormous amount of courage in which to trade a productive successful life for one that is full of the word "no."
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