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. Sucks that all this is happening to you. I won't even begin to say I know how you feel, but I can sympathize, as my spinal problems get worse every year. The good news is, no one will ever ask you to help them move again. We are broke too, but if there is any way I can help you guys with other stuff, all you have to do is ask, and should I win the lottery, you know I will take care of you guys. I miss you all living in town!

  2. Doc,
    Writing does help dealing with MS, so keep at it. Placing your head under the front wheel of a car helps too--but I wouldn't recommend it.

    Keep your head up & keep moving. Move what you can when you can. I am a big advocate of activity. Dx'd in '96 w/secondary progressive. (Does it really matter what kind of MS we have? It's all just one person's perspective! I say "BS" on the type of MS.)

    Keep fighting.

  3. Christie:

    We miss you as well. We must get together before we move in June. It has been way to long since we saw you last and must catch up. And don't be sorry for me, it's just life and we must take what is given no matter what.

  4. Odd Sock: I have tried the head under the wheel, but once I get my head down there I realize that I didn't take the truck out of park. And when I put it in drive, it is a bitch trying to catch up to the truck to put my head under the wheel again. Such a vicious cycle!!!