In November of 2012 I was pulled over by a Deputy in Greene County, Va for speeding. According to this nice officer, I was doing 70 in a 55 mile per-hour zone. After an initial continuance in December, my case comes up tomorrow at 930am. I have been thinking long and hard as to what my plea is going to be in regards to this and several things have gone through my head. I could plead guilty, be fined and lose a few points on my license. Or, I could plead not guilty and try to argue my case and hope that I can get the penalty lowered and not lose points on my license.
If I plead guilty, not only do I have to pay a fine and lose points, but my insurance rate goes up and even though I just "saved a bunch of money by switching to Geico" I still pay more than I did when I was with USAA for the past few years and I really don't want to, nor can I afford to, spend more money on my car insurance. Plus, after many years of driving emergency vehicles, I don't feel as though my little moment of speed should result in so many penalties after I spent so many years racing to get to emergencies and dodging other motorists and pedestrians, "safe speeding" put no one else in any danger and was just a momentary oops on my part.
Now, if I plead innocent, I then have to argue my case to the judge and hope that I can make him see the situation from my point of view and levy a lesser penalty or the illusion dismissal upon me. One of the points that I plan to use in my argument is my MS. Hear me out here. I have muscle spasms that are mostly unable to be controlled by me. Usually in the morning I take several medications that are designed to minimize my spasms and return me to a quasi level of control over my movements. On this particular morning, as happens many mornings, when I attempted to take the gambit of pills, my body worked against me and I vomited. I have always had some trouble taking pills ever since I was just a wee little lad, and sometimes even in adulthood I continue to have trouble. As a matter of fact, this morning was the same and I was not able to take any of my daily meds until this afternoon and had to take one and wait before attempting to take any of the others. Due to not being able to take any of the drugs that work to control my involuntary spasms that day, I may have had a spasm resulting in me pressing the accelerator thus causing me to go faster than the posted speed limit. So, Your Honor, please issue the ticket to my brain and central nervous system since they are clearly the culprit here and the rest of me should not be held responsible for their poor actions.
Now that I have mentioned the "posted speed limit" I must take issue with that as well. The sign on the road merely states "speed limit" and does not indicate to the driver whether that is a minimum or maximum speed limit. Judging by the other drivers on the roadway, I take it that the signs are merely stating what the minimum speed on the roadway is. I mean, if it were the maximum speed limit, then people would not be able to safely maneuver that roadway at a higher speed, correct? And in contrast, if it were a minimum speed limit, then the old lady driving 15 m.p.h under the speed limit should have been issued a ticket for impeding traffic and creating an unsafe situation for all of us by preventing the continuous flow of traffic and the safe minimum speed.
I drive the same stretch of road everyday since there is only one route from my house to Charlottesville, Va. Since I was issued the ticket, I pay close attention to every speed limit sign that I pass on my route, and not a single one indicates as to whether the speed posted is the minimum or maximum speed for that stretch of road. I have seen signs before in other locations that state "Maximum Safe Speed Limit of __ m.p.h," but have yet to see on on my route to indicate this. To assume one of the other would, as they say, "make an ass out of you and me." I make an ass out of myself enough, I don't need to do so in the eyes of so many other travelers by assuming that the speed posted is the minimum or maximum speed that I should travel at. The Department of Transportation knows the safe travel speed of the roads, and they should be required to inform travelers of those routes as to what the safest maximum speed is. I mean, the Audobaun doesn't have signage that say "travel between 30k.p.h and 150 k.p.h. next 50kM." Hell, they lay the road, and it is up to you to know how safely you can travel and at what speed you can safely do so.
So, who is responsible for my speeding infraction? Do I blame my disease that can occasionally cause my leg to force the accelerator to increase my speed when I don't want it to and normally have my cruise control engaged to prevent such incidents? Or do I blame the DOT for not indicating whether the posted speed limit is the slowest or fastest that I should travel on that particular stretch of road? I guess the Judge will have to be the "judge" of this one and I hope that my argument is a convincing one. Either way, it will be another lesson learned in my life, or at least something like it..
Tuesday, January 22, 2013
Sunday, January 20, 2013
Dakota, dontcha know
As I have recently mentioned in a few blogs, we have reached the end of our lease on January 1st, 2013 and were seeking a new place to live. Due being disabled and awaiting a decision from Social Security, financially we have been in dire straits (now you hear Money for Nothin playing in your head) for several months. I recently reached out to my father and step-mother asking them, yet again, for assistance. Fearing that their answer would be "no," what they proposed completely blew me away.
My father stated that he would send us some money, but to call Brinda (step-mom) because she wanted to discuss some "options" with me over the phone. Other than homelessness, I didn't really know that there were other options. Very worried, I called her up and she began going over a scenario with me that my wife has actually joked about several times in the past. The main option was that my parents had decided to construct a trust fund for myself and my sister. Brinda and my father had started buying and renting out real estate in South Dakota over the past several years where she and my sister live and perhaps I could "consider" moving my family out there to live in one of their houses until we found one we liked at which point they would invest money into the equity of the home until it was "paid off" and it would become ours. My wife has joked several times that we should just ask Brinda to buy us a house, at which point we always have a good chuckle knowing that neither of us would ever have balls big enough to make such a huge request. Here it is now, and they are offering us this exact opportunity. The first property that she offered us sounds like the perfect property for us to make a new life in.
I have lived in many places and have wanted to visit many more, but work and low income have always hindered those plans. We have been living hand to mouth for a number of years, and never saw a way for us to get our heads completely above water. Now, my family has found a way for us to not only get our heads above water, but to finally get out of the water and onto dry land. We will finally have a level of stability in our lives that I never imagined would be possible. It's funny, I say stability and yet I am completely unstable with my extremities. How ironic.
I can't begin to express how I feel about this offer. It took less than a second for me to express my total agreement to this proposed plan, but I am still unable to find the words to express how happy and "blown away" I am at this offer for a new and better life. I have always felt like the "black sheep" in my family and as though I have been a total burden on them all. Yet, here they are offering the one chance to make everything better for me, my wife, and our amazing children. A chance to essentially start over in a new place, with limitless opportunities to better ourselves and the lives of our children. As I have stated before, they have no requirements to help us, I am a grown man who has made choices in life that have led me to where I am today. They have no ulterior motives which makes helping us a priority to them. They are going way above and beyond anything they ever need to do to make our lives 100 times better than it ever would be without their help. I feel like Orphan Annie and they are my Daddy Warbucks. Perhaps that was not the best analogy since it paints me as a little red headed orphan and them as a aging bald man with a strange Punjabi butler, but it was all I could think of to describe it.
So, for the next 5 months we will be remaining here in Virginia at a temporary rental house until school is out for the kids, then we will be hitching up the wagons and heading west to design our new future. Hopefully, once out there I will actually be able to enjoy retirement for once without the absolute need to rush to work in order for us all to survive and I will be able to focus a lot more attention to my writing thus allowing my goal this year of publishing my first book to actually happen. I will finally be able to spend more time with my little minions as they grow up and enjoy the time spent with them without worrying about them feeling abandoned when I have to leave to go back to work. Perhaps I will be able to finally get a tan. Who knows. All I know is that for once in a very long time, good fortune is shining upon me and everything is coming up roses. I just have to watch out for the thorns. I never thought this would actually be my life, but I am glad that it is something like it...
My father stated that he would send us some money, but to call Brinda (step-mom) because she wanted to discuss some "options" with me over the phone. Other than homelessness, I didn't really know that there were other options. Very worried, I called her up and she began going over a scenario with me that my wife has actually joked about several times in the past. The main option was that my parents had decided to construct a trust fund for myself and my sister. Brinda and my father had started buying and renting out real estate in South Dakota over the past several years where she and my sister live and perhaps I could "consider" moving my family out there to live in one of their houses until we found one we liked at which point they would invest money into the equity of the home until it was "paid off" and it would become ours. My wife has joked several times that we should just ask Brinda to buy us a house, at which point we always have a good chuckle knowing that neither of us would ever have balls big enough to make such a huge request. Here it is now, and they are offering us this exact opportunity. The first property that she offered us sounds like the perfect property for us to make a new life in.
I have lived in many places and have wanted to visit many more, but work and low income have always hindered those plans. We have been living hand to mouth for a number of years, and never saw a way for us to get our heads completely above water. Now, my family has found a way for us to not only get our heads above water, but to finally get out of the water and onto dry land. We will finally have a level of stability in our lives that I never imagined would be possible. It's funny, I say stability and yet I am completely unstable with my extremities. How ironic.
I can't begin to express how I feel about this offer. It took less than a second for me to express my total agreement to this proposed plan, but I am still unable to find the words to express how happy and "blown away" I am at this offer for a new and better life. I have always felt like the "black sheep" in my family and as though I have been a total burden on them all. Yet, here they are offering the one chance to make everything better for me, my wife, and our amazing children. A chance to essentially start over in a new place, with limitless opportunities to better ourselves and the lives of our children. As I have stated before, they have no requirements to help us, I am a grown man who has made choices in life that have led me to where I am today. They have no ulterior motives which makes helping us a priority to them. They are going way above and beyond anything they ever need to do to make our lives 100 times better than it ever would be without their help. I feel like Orphan Annie and they are my Daddy Warbucks. Perhaps that was not the best analogy since it paints me as a little red headed orphan and them as a aging bald man with a strange Punjabi butler, but it was all I could think of to describe it.
So, for the next 5 months we will be remaining here in Virginia at a temporary rental house until school is out for the kids, then we will be hitching up the wagons and heading west to design our new future. Hopefully, once out there I will actually be able to enjoy retirement for once without the absolute need to rush to work in order for us all to survive and I will be able to focus a lot more attention to my writing thus allowing my goal this year of publishing my first book to actually happen. I will finally be able to spend more time with my little minions as they grow up and enjoy the time spent with them without worrying about them feeling abandoned when I have to leave to go back to work. Perhaps I will be able to finally get a tan. Who knows. All I know is that for once in a very long time, good fortune is shining upon me and everything is coming up roses. I just have to watch out for the thorns. I never thought this would actually be my life, but I am glad that it is something like it...
Thursday, January 10, 2013
A great day
Some days are just wonderful! Today was one of those days for me and Tyonna. It doesn't matter what else is going on, how much your mind may be burdened by something, how people treat you, or whether you woke up on the wrong side of the bed or sprawled out on the floor. A small event can make all the difference in how your day goes.
I woke up at 430pm which is about 3 hours later than I should have gotten out of bed. For once I felt well rested and a little guilty for being late to get the day started. When I let "stupid dog" out to take care of his business I noticed that our mailman had placed the mail on the porch table instead of the mailbox at the end of the driveway. He never does that unless it is a box that won't fit in the mailbox, so this struck me as rather odd. I quickly discovered why. The large manila envelope seemed to be a little bit larger than the area of the mailbox and clearly he didn't want to risk bending it to make it fit, thus the extra and much appreciated approach of placing it at my doorstep. Looking at the envelope I noticed a once in a lifetime return address: The White House. Inside I found a signed family portrait of the First Family and a letter from POTUS to me. The extremely kind words from The President put a huge smile on my face and made my heart swell! I could not believe that he personally wrote to me, and physically signed his letter rather than using some type of rubber stamp and a preform letter. This was created directly to me. What a feeling!
Next I checked my email as I waited for my truck to warm up and found an email from a fellow MS blogger that I had recently discovered. I wrote to the blogger very early in the morning letting him know how much I enjoyed reading his blog and asking him to read mine. Apparently he read mine and even left a comment on it (see Lessons from 2012) as well as asked if I would like to be listed on his blogcall list so that his readers would be able to read my blog as well. This person has a very professional blog and I can only imagine the connections that his readership will be able to extend to mine. My Doug Ankerman and his My Odd Sock blog are my new friends and I truly look forward to this new connection! Check it out when you get the chance, www.myoddsock.com. It is refreshing to know that there are a few of us with MS who view every day with a good dose of humor!
My wife received a small promotion at work today. She is now a Special Matter Specialist, which personally sounds to me as if she should be analyzing alien droppings or something of that matter. What it officially means is that she is now the Assistant Manager of her store. Unfortunately it does not come with a pay increase (I used to work for the same company, and last thing they wish to do is spend money on anyone or anything) but it does finally prove that all her hard work is being recognized! Way to go Tyonna! She has been with the company for almost a year and it is about time that someone has recognized all of the knowledge, talent, and extremely hard work that she has put into her job. I am so extremely proud of her.
It is days like today that make everything I do in life worth it. I again feel as though others appreciate what I do and have done in the past when even someone who should be behind me 100% doesn't support me. If you have read my other blogs then I don't think that I really need to mention who that person is. Mr Ankerman has shown me that my small piece of the blogosphere has been appreciated by him (who is vastly more experienced in blogging than I) and that he is willing to "sponsor" me in my writing. It shows that even the most powerful man in America took the time to read my blog and supports what I do and have done in the past. And I see that my wife is finally getting the recognition that she deserves. I feel a renewed sense of self and a new level of determination to complete what I have set out to accomplish. I also hope that it does the same for you.
In the grand scheme of life, I am a nobody. I am not famous, or rich, or even well known. I am a man living life with the cards that are dealt to me in the best way that I know how. I don't have fame or fortune afforded to me in order to make my mark on the world, I am merely trying to do so with the few means at my disposal and I must show my appreciation to those people in my life who have helped me in achieving that goal. I also have to thank my new friends who are helping me along the way and making this all worth it. I hope that my story and small success are able to inspire you! Proof that a nobody can reach goals when you set out to accomplish them without much support. You are all the leadership and support that you need. I am proof of this. Remember, it is always your life, or at least something like it...
I woke up at 430pm which is about 3 hours later than I should have gotten out of bed. For once I felt well rested and a little guilty for being late to get the day started. When I let "stupid dog" out to take care of his business I noticed that our mailman had placed the mail on the porch table instead of the mailbox at the end of the driveway. He never does that unless it is a box that won't fit in the mailbox, so this struck me as rather odd. I quickly discovered why. The large manila envelope seemed to be a little bit larger than the area of the mailbox and clearly he didn't want to risk bending it to make it fit, thus the extra and much appreciated approach of placing it at my doorstep. Looking at the envelope I noticed a once in a lifetime return address: The White House. Inside I found a signed family portrait of the First Family and a letter from POTUS to me. The extremely kind words from The President put a huge smile on my face and made my heart swell! I could not believe that he personally wrote to me, and physically signed his letter rather than using some type of rubber stamp and a preform letter. This was created directly to me. What a feeling!
Next I checked my email as I waited for my truck to warm up and found an email from a fellow MS blogger that I had recently discovered. I wrote to the blogger very early in the morning letting him know how much I enjoyed reading his blog and asking him to read mine. Apparently he read mine and even left a comment on it (see Lessons from 2012) as well as asked if I would like to be listed on his blogcall list so that his readers would be able to read my blog as well. This person has a very professional blog and I can only imagine the connections that his readership will be able to extend to mine. My Doug Ankerman and his My Odd Sock blog are my new friends and I truly look forward to this new connection! Check it out when you get the chance, www.myoddsock.com. It is refreshing to know that there are a few of us with MS who view every day with a good dose of humor!
My wife received a small promotion at work today. She is now a Special Matter Specialist, which personally sounds to me as if she should be analyzing alien droppings or something of that matter. What it officially means is that she is now the Assistant Manager of her store. Unfortunately it does not come with a pay increase (I used to work for the same company, and last thing they wish to do is spend money on anyone or anything) but it does finally prove that all her hard work is being recognized! Way to go Tyonna! She has been with the company for almost a year and it is about time that someone has recognized all of the knowledge, talent, and extremely hard work that she has put into her job. I am so extremely proud of her.
It is days like today that make everything I do in life worth it. I again feel as though others appreciate what I do and have done in the past when even someone who should be behind me 100% doesn't support me. If you have read my other blogs then I don't think that I really need to mention who that person is. Mr Ankerman has shown me that my small piece of the blogosphere has been appreciated by him (who is vastly more experienced in blogging than I) and that he is willing to "sponsor" me in my writing. It shows that even the most powerful man in America took the time to read my blog and supports what I do and have done in the past. And I see that my wife is finally getting the recognition that she deserves. I feel a renewed sense of self and a new level of determination to complete what I have set out to accomplish. I also hope that it does the same for you.
In the grand scheme of life, I am a nobody. I am not famous, or rich, or even well known. I am a man living life with the cards that are dealt to me in the best way that I know how. I don't have fame or fortune afforded to me in order to make my mark on the world, I am merely trying to do so with the few means at my disposal and I must show my appreciation to those people in my life who have helped me in achieving that goal. I also have to thank my new friends who are helping me along the way and making this all worth it. I hope that my story and small success are able to inspire you! Proof that a nobody can reach goals when you set out to accomplish them without much support. You are all the leadership and support that you need. I am proof of this. Remember, it is always your life, or at least something like it...
Wednesday, January 9, 2013
Lessons from 2012
With my diagnosis of Progressive MS, there are several things that I have learned during 2012. Unfortunately, most of the lessons I have learned were not what one would consider good lessons, I consider them good to have learned and are important. Like any lesson in life, what you do with them once they have been learned is up to the person, just as the outlook and they way they affect you is up to the person. I believe that one should learn something new every day, otherwise what's the point of waking up? Here are the things that I learned in 2012.
1: Dressing oneself is not easy. I have been dressing myself since I was a very young lad many many moons ago. Granted, I may not have the best taste, style, or eye for fashion, but I was fairly accomplished with actually putting my clothes on unassisted. Now that my MS has affected my coordination, sometimes the simple act of getting dressed can be a challenge. Buttons are not always my fiend and sometimes lead to wardrobe changes. When I begin attempting to put on a shirt with buttons such as the dress shirts I had to wear for work up until recently, coordinating my fingers to put the button through the provided matching hole was not an easily achievable task. No matter how well I tried to communicate to my hand how to accomplish this tiny little task, the message would somehow get jumbled and my fingers would do whatever they wanted to rather than what I clearly instructed them to do. Perhaps I am just not fluent in "finger" and need to adjust my communication skills, but I have yet to find that language available through Rosetta Stone. Perhaps drawing diagrams might be of some use. Too bad I can't draw.
2: I am a burden to many. I found that once a disease takes hold of you, there are certain things that you are no longer able to do. One of those things for me was be a provider for my family. Now, if you ask my mother, I was never good in this department to start with, so in her eyes nothing has really changed there. Hey, at least that's one person I haven't let down since they never really had any expectations of me to begin with. Since with MS one has "good days" and "bad days" where the disease affects you more than other days, working a steady job where people rely upon you is not always easy. This of course also depends upon what your job was when you got sick. As a paramedic, the coordination of my hands comes into play heavily. No one wants Mr Shaky to start an IV. For some reason when you come at someone with a sharp needle and your hands are shaking violently they tend to question your abilities. Go figure. Subsequently, when memory issues start to surface as well, remembering certain medication doses and algorithms can make you appear as though you don't know what you doing. I honestly know what I am doing, I just may not always remember it at that exact moment. Hey, chances are you are already dead and I am bringing you back to life, gimme a minute, it's not like you are going anywhere. Unfortunately, as a firefighter, the need to coordinate your hands and feet is a necessity. Very rarely are we lucky enough to have victims on the first floor of a house out in the open where access to them is easy and simple. Almost always they are on the second floor and above and there is never an escalator when you need one. Not to mention the 50 pounds of protective gear that we have to wear. So, that aspect of my career was pretty much ended for me once symptoms began affecting my ability to walk and move without assistance. That left me with filing for disability with the Social Security Administration. One thing that no one really tells you when you file for disability is that the process is long. I don't mean DMV long, I mean like calculus with a slate and chisel long. I filed in August and have yet to hear anything other than "we are reviewing your case." After some research, I have discovered that this process can take several years. Funny thing about that is that during this time frame, you can't really work a "normal" job since you are filing disability claiming that you can't work a "normal" job, thus working one totally blows your case. Thus you have no source of income and no way to earn income without stopping your disability claim. Then of course you will eventually get to where you again have no choice but to file again when you get worse, and will have to begin the many month/year process all over again. Nice little Catch 22 there isn't it? Since I can't work, I have no income and have to rely on my wife's small income to run our entire household. The problem is that people like the electric company, landlord, insurance company and the like really want you to pay them every month. They are really particular about that. Thus, I have been forced to be a burden upon my family, on multiple occasions.
Currently, we are past the end of our lease on our rented house and need to move. Problem: no money since I can't work and as stated before, wife has small income from her full-time sales job. ***Shameless plug: if you need a cell phone, go to Verizon Wireless in Orange, Va and buy from her!!!*** Since I am still waiting on the SSA to decide if I am cripple enough for help, there is very little I can do other than ask family for help. So much for me being an adult. I have turned to my father and step-mother requesting their assistance, which I have had to do several times this year, and they have been amazing! They have helped us more times than I can count, and I can't even begin to convey our gratitude in words to the help that they have provided us when they really have no requirements to do so. We are currently praying that they will assist us this time with a request that even a bank would require a large collateral for to even consider such a request. I have never felt like such a loser in life except when I have to crawl to my father and admit total failure in life. Thankfully anytime I need reassurance to my total lifelong failure, a simple call to my mother can accomplish that in just a matter of minutes. Gotta love Jewish guilt. We make Catholics look like saints.
So, not only do I get to be a burden on my family, but because I have filed for disability I also get to be a burden on the taxpayers. Since I can't always dress myself without assistance, I get to be a burden on my wife. When I have days where I have trouble walking and balancing, I get to be a burden on both my wife and my children who have to assist me with getting around. So, I generally have learned that I am a burden to all that I am around. Nice to know!
3: Life is hysterical, but you have to allow it to be. Things can be tragic, sad, overwhelming, funny, hysterical, pee yourself funny if you allow yourself the chance to view them as such. As I have mentioned in my blog, constant falling, tripping, memory loss, speech problems and the like plague those of us with MS. What's funny is that we are all affected differently and at different stages of the disease. Also, what affects you today or this week, might not affect you tomorrow or next week. For instance, I lost a lot of the use of my right arm a few weeks ago. I wrote about it here, it caused many laughs amongst myself and my wife. Hell, even my youngest daughter thought it was funny as she was trying to teach me how to write again. Today, the use of my right arm is back to about 95% of its normal usage. All of a sudden it seemed to return to normal about a week ago. Yet today, my vision (to me) appeared as if I were intoxicated. Things appeared to move a little bit "off" and seemed to have "trails". My balance was a little bit worse than normal and I felt as though I was "high" most of the day. Now that I am home and writing this and am actually high from the Percocet and Soma that I am prescribed to take nightly, I feel absolutely normal. You really gotta love how this disease can play funny little tricks on you.
Rather than letting these changes in your daily life get you down, keep positive, laugh at them, and your entire outlook will make everything more positive for you. Early on I let the diagnosis and the affects that I was beginning to notice more and more bring me down overall. I felt the depression. I felt hopeless. And you know what, I noticed that my symptoms were worse. I left as though I was getting worse and was worthless. Once I came to terms with things and changed my outlook to seek out the humor in what was happening to me, everything seemed to change for the better. Sure, I am still sick. I still fall down, rely on my cane which I named Citizen (if I have to explain the name it loses it's humor), sometimes I need my wheelchair, I don't have as much energy and may have to nap during the day just to keep lucid enough to be a part of my surroundings, and sure, I can't sleep worth anything at night. But, all of it has it's own humor with it if you open yourself up to allow it. I mean how often can a person sit in a wheel chair and say "you can't push me around" and still sound like a tough guy? When my speech begins to slur horribly I just tell people that I am speaking in cursive. I can take a nap in the middle of the day and not be lazy, I am taking a "medical break." And when I fall, I can bring others down with me if they are close enough. When they ask why, I just tell them that I am merely trying to change their world perception. Anything negative can appear positive if you just change the wording.
So, I may have discovered many different things about myself this past year, but I have discovered the hysterical side of them as well and this leads me into a new and more positive 2013. I have learned that no matter what, I am still me, and I am still here. As I have stated before as have many before me, "I have MS, but MS doesn't have me." The positivity I feel when I write about my life with MS actually makes everything seem brighter to me, not more negative. Seeing the words that I think and feel flow forth from my fingertips onto these pages in order for others to read my words and hopefully have a few chuckles makes me realize that I still have a lot of work left to do here before I allow this disease to take anything more from me. I have also deemed that 2013 will be my best year. I may still be a burden on my family and society, but I am also going to give back to both by continuing to survive, providing laughter to all those around me, and by staying positive. I have decided that this is the year I am going to do something with my writing since I really have nothing else to do with my time other than wait for the SSA to determine if I am cripple enough to warrant disability. And thanks to the people I have only recently discovered are behind me in my corner when it comes to my writing, I am going to focus all my energy on publishing some of my writing this year, at least my book that has inspired me to begin this blog initially. So, I thank you to those who stand behind me on this (they have learned not to stand too close in case I start to fall since they know I will grab and take them with me) and promise to be all I can be this year. I just have to remember that this is my life, or at least something like it!
1: Dressing oneself is not easy. I have been dressing myself since I was a very young lad many many moons ago. Granted, I may not have the best taste, style, or eye for fashion, but I was fairly accomplished with actually putting my clothes on unassisted. Now that my MS has affected my coordination, sometimes the simple act of getting dressed can be a challenge. Buttons are not always my fiend and sometimes lead to wardrobe changes. When I begin attempting to put on a shirt with buttons such as the dress shirts I had to wear for work up until recently, coordinating my fingers to put the button through the provided matching hole was not an easily achievable task. No matter how well I tried to communicate to my hand how to accomplish this tiny little task, the message would somehow get jumbled and my fingers would do whatever they wanted to rather than what I clearly instructed them to do. Perhaps I am just not fluent in "finger" and need to adjust my communication skills, but I have yet to find that language available through Rosetta Stone. Perhaps drawing diagrams might be of some use. Too bad I can't draw.
2: I am a burden to many. I found that once a disease takes hold of you, there are certain things that you are no longer able to do. One of those things for me was be a provider for my family. Now, if you ask my mother, I was never good in this department to start with, so in her eyes nothing has really changed there. Hey, at least that's one person I haven't let down since they never really had any expectations of me to begin with. Since with MS one has "good days" and "bad days" where the disease affects you more than other days, working a steady job where people rely upon you is not always easy. This of course also depends upon what your job was when you got sick. As a paramedic, the coordination of my hands comes into play heavily. No one wants Mr Shaky to start an IV. For some reason when you come at someone with a sharp needle and your hands are shaking violently they tend to question your abilities. Go figure. Subsequently, when memory issues start to surface as well, remembering certain medication doses and algorithms can make you appear as though you don't know what you doing. I honestly know what I am doing, I just may not always remember it at that exact moment. Hey, chances are you are already dead and I am bringing you back to life, gimme a minute, it's not like you are going anywhere. Unfortunately, as a firefighter, the need to coordinate your hands and feet is a necessity. Very rarely are we lucky enough to have victims on the first floor of a house out in the open where access to them is easy and simple. Almost always they are on the second floor and above and there is never an escalator when you need one. Not to mention the 50 pounds of protective gear that we have to wear. So, that aspect of my career was pretty much ended for me once symptoms began affecting my ability to walk and move without assistance. That left me with filing for disability with the Social Security Administration. One thing that no one really tells you when you file for disability is that the process is long. I don't mean DMV long, I mean like calculus with a slate and chisel long. I filed in August and have yet to hear anything other than "we are reviewing your case." After some research, I have discovered that this process can take several years. Funny thing about that is that during this time frame, you can't really work a "normal" job since you are filing disability claiming that you can't work a "normal" job, thus working one totally blows your case. Thus you have no source of income and no way to earn income without stopping your disability claim. Then of course you will eventually get to where you again have no choice but to file again when you get worse, and will have to begin the many month/year process all over again. Nice little Catch 22 there isn't it? Since I can't work, I have no income and have to rely on my wife's small income to run our entire household. The problem is that people like the electric company, landlord, insurance company and the like really want you to pay them every month. They are really particular about that. Thus, I have been forced to be a burden upon my family, on multiple occasions.
Currently, we are past the end of our lease on our rented house and need to move. Problem: no money since I can't work and as stated before, wife has small income from her full-time sales job. ***Shameless plug: if you need a cell phone, go to Verizon Wireless in Orange, Va and buy from her!!!*** Since I am still waiting on the SSA to decide if I am cripple enough for help, there is very little I can do other than ask family for help. So much for me being an adult. I have turned to my father and step-mother requesting their assistance, which I have had to do several times this year, and they have been amazing! They have helped us more times than I can count, and I can't even begin to convey our gratitude in words to the help that they have provided us when they really have no requirements to do so. We are currently praying that they will assist us this time with a request that even a bank would require a large collateral for to even consider such a request. I have never felt like such a loser in life except when I have to crawl to my father and admit total failure in life. Thankfully anytime I need reassurance to my total lifelong failure, a simple call to my mother can accomplish that in just a matter of minutes. Gotta love Jewish guilt. We make Catholics look like saints.
So, not only do I get to be a burden on my family, but because I have filed for disability I also get to be a burden on the taxpayers. Since I can't always dress myself without assistance, I get to be a burden on my wife. When I have days where I have trouble walking and balancing, I get to be a burden on both my wife and my children who have to assist me with getting around. So, I generally have learned that I am a burden to all that I am around. Nice to know!
3: Life is hysterical, but you have to allow it to be. Things can be tragic, sad, overwhelming, funny, hysterical, pee yourself funny if you allow yourself the chance to view them as such. As I have mentioned in my blog, constant falling, tripping, memory loss, speech problems and the like plague those of us with MS. What's funny is that we are all affected differently and at different stages of the disease. Also, what affects you today or this week, might not affect you tomorrow or next week. For instance, I lost a lot of the use of my right arm a few weeks ago. I wrote about it here, it caused many laughs amongst myself and my wife. Hell, even my youngest daughter thought it was funny as she was trying to teach me how to write again. Today, the use of my right arm is back to about 95% of its normal usage. All of a sudden it seemed to return to normal about a week ago. Yet today, my vision (to me) appeared as if I were intoxicated. Things appeared to move a little bit "off" and seemed to have "trails". My balance was a little bit worse than normal and I felt as though I was "high" most of the day. Now that I am home and writing this and am actually high from the Percocet and Soma that I am prescribed to take nightly, I feel absolutely normal. You really gotta love how this disease can play funny little tricks on you.
Rather than letting these changes in your daily life get you down, keep positive, laugh at them, and your entire outlook will make everything more positive for you. Early on I let the diagnosis and the affects that I was beginning to notice more and more bring me down overall. I felt the depression. I felt hopeless. And you know what, I noticed that my symptoms were worse. I left as though I was getting worse and was worthless. Once I came to terms with things and changed my outlook to seek out the humor in what was happening to me, everything seemed to change for the better. Sure, I am still sick. I still fall down, rely on my cane which I named Citizen (if I have to explain the name it loses it's humor), sometimes I need my wheelchair, I don't have as much energy and may have to nap during the day just to keep lucid enough to be a part of my surroundings, and sure, I can't sleep worth anything at night. But, all of it has it's own humor with it if you open yourself up to allow it. I mean how often can a person sit in a wheel chair and say "you can't push me around" and still sound like a tough guy? When my speech begins to slur horribly I just tell people that I am speaking in cursive. I can take a nap in the middle of the day and not be lazy, I am taking a "medical break." And when I fall, I can bring others down with me if they are close enough. When they ask why, I just tell them that I am merely trying to change their world perception. Anything negative can appear positive if you just change the wording.
So, I may have discovered many different things about myself this past year, but I have discovered the hysterical side of them as well and this leads me into a new and more positive 2013. I have learned that no matter what, I am still me, and I am still here. As I have stated before as have many before me, "I have MS, but MS doesn't have me." The positivity I feel when I write about my life with MS actually makes everything seem brighter to me, not more negative. Seeing the words that I think and feel flow forth from my fingertips onto these pages in order for others to read my words and hopefully have a few chuckles makes me realize that I still have a lot of work left to do here before I allow this disease to take anything more from me. I have also deemed that 2013 will be my best year. I may still be a burden on my family and society, but I am also going to give back to both by continuing to survive, providing laughter to all those around me, and by staying positive. I have decided that this is the year I am going to do something with my writing since I really have nothing else to do with my time other than wait for the SSA to determine if I am cripple enough to warrant disability. And thanks to the people I have only recently discovered are behind me in my corner when it comes to my writing, I am going to focus all my energy on publishing some of my writing this year, at least my book that has inspired me to begin this blog initially. So, I thank you to those who stand behind me on this (they have learned not to stand too close in case I start to fall since they know I will grab and take them with me) and promise to be all I can be this year. I just have to remember that this is my life, or at least something like it!
Sunday, January 6, 2013
What's to blame???
I received a letter from the Veterans Administration on Friday which I requested in August in order to file my claim for my MS disability. One of the things that is needed to prove to the VA is that the disease/disability is related to my military service. Here in lies the problem when you have a disease that has no provable known origins.
I was in the US Navy in the late 90s and discharged under honorable conditions due to a medical condition in 1999 and receive a small monthly disability check from them ever since. The disability that I was discharged from has nothing to do with my MS. However, can my current disability be related to my service in the Navy? I worked with fire fighting crews when I was active duty. In the "A" school I attended to become a Naval Fire Fighter, one week is spent daily in the gas chamber as part of the training. This means that for several hours a day for 7 days I was exposed to CX (tear gas) without any sort of fresh air mask. One of the theories for developing MS is exposure to various toxins. Does this count as that type of exposure? This is the interpretation that the VA medical staff must now make in order to decide if my current state is related to my military service. Yet there are still several factors that at hinder this.
I spent 17 years as a fireman. Now, if you take 17 years from 2012, you come to 1995. If anyone worked as a fire fighter in 1995 they will be able to tell you that we didn't often wear our air masks until it got to the point that you could no longer breathe, or you noticed that you no longer had facial hair due to the fire claiming it as its own. I was no exception back then. My pack was their to keep me balanced and more often then not would end up being used to prop a door open whilst I battled the fire inside or searched for a victim. Who knew that all the crap in the air was hazardous? I mean, it's just like a big camp fire right? Nope, we were wrong.
I also worked at both the Pentagon and at Ground Zero after the 9/11 attacks. Well guess what we weren't wearing at those to sites? That's right, fresh air or filtration masks. Again, there was a job to do and back in the day (yup, just made myself sound old) we actually cared more about our victims than we did about ourselves. Man how the fire service has changed since those days. Funny enough though, when I submitted my claim to the 9/11 commission in regards to my MS, I was told that MS was not one of the recognized diseases from Ground Zero exposure. If I had developed cancer though, they would have been able to assist me with compensation, but MS, not so much.
I could submit my claim to the fire department and see what they say, but from what I have learned from discussing it with occupational health and safety, if it's not cancer, it's not conclusively related to exposure. Gotta love the system.
This leaves me with no conclusive source of my disease. Perhaps I just received an unlucky card in the game of life. Who knows. When you have a disease with no "official" origin of exposure and modern science can't prove without a doubt what triggered your illness, what do you do? Your occupation may have been the cause of it, or it could have been the microwave burrito you bought at that convenience store back in 1991. No one knows, and the answers has yet to be discovered. Mere suspicions as to what caused this disease are all one has to go on. Perhaps it was my exposure to a number of toxins, but can I identify which ones? Carbon and man made incinerated home items during years of fighting fires? Jet fuel, concrete dust, asbestos, and incinerated human remains during my time working at Ground Zero? All the Twinkies I ate as a child or the copious amounts of coffee consumed through my life? Which of those are to blame? No doctor will be able to give you the answer, because no one knows for sure what causes/triggers MS. Some people develop it, others never do. Perhaps it is hiding in your genes somewhere dormant until something in your life triggers it. Hopefully you will remain a lucky person and that will never happen to you. Of course, of you have read any of my other blogs you will see that it is not all bad and can result in some very funny moments in your life.
Again, these questions are left without answers by both doctors and by those of us with MS. If we all worked in the same career field and all developed this disease, we would have a difinitive answer. You work in fire/rescue, you will most likely get MS. If that were the answer to the question, I wonder how many people would still seek out a career in this field? I know that I personally would still do it because it truly is the most rewarding field of work and it truly is a "calling" rather than a career choice. But I still wonder if perhaps people would second guess that calling if they knew for certain that they would develop a disease such as this. Go figure, the answers we may never know. Either way, this is still just life, or something like it...
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