Hello World, I have been thinking about starting to do my blog again. One of the many reasons that I seemed to have stopped other than too few people who actually read what I had to say, was that finding the time and motivation to write were getting difficult and like many things in life, I simply gave up. Ironically, I felt the constant need to articulate the words that were swirling around in my brain yet at the same time was upset that I had no one to say those words to. If I had just put my words to the screen (to paper would be a bit of an antiquated saying), I could have at least gotten them out of my head and freed up some of the tiny space that I have left in here. So. perhaps it is time for me to put down a few words, feelings, and perhaps a little bit of myself for others to read and to know that they are not alone.
It is officially 2017 now. Trump is soon to be in the White House (has a whole different meaning depending upon who you ask). There have already been terrorist acts committed both upon American soil and afar. And today we got the first snow in the little part of the world that we live in. So, the new year is now official and nothing (other than the snow) has really changed since 2016. Have you?
I can pretty much say that I am the same asshole that I was on December 31st as I was on January 1st. Part of me hopes that you (my reader) can say the same thing. To think that a simple date change will cause a significant change in a person is absurd. I used to embrace the tradition of "New Year=New Me" and then realized that no matter what significant personal improvements I state I will make on the 31st of December will only last a short time before I revert to my normal ways and cause those in my life some form of disappointment. It is so much less impressive when you continue the path of disappointment without anyone noticing that for a short period of time you were "different" and thus you have now become even more disappointing than you were before you attempted the chance. Due to this, I found that I should just keep things to myself and if there are things in my life that I can change without making a huge deal about doing so, then I will. At least this way, if I am unable to change (usually unwilling is more accurate) then the only person who I have let down would be myself.
I believe that the biggest change I would make (if I actually wanted to make a change) would have to be the resentment I feel when I see people doing things and not having any difficulty or when I read them complain about something that seems so trivial due to MS involvement in my life. Now, this isn't to say that I would treat the people any different or that I dislike those people who are making the statement, but I feel the....rage (rage would be a good description here) well up inside of me and the desire to just shake the living shit out of people is present. I hear so many people without any type of visible illness or disease complain about something (usually something they have some control over) and yet in my little MS world it seems as such a trivial thing. I keep reminding myself that people are often dealing with situations that one could never imagine unless they have been in that person's shoes. By this I don't mean that they were in the same situation, I mean that they were ACTUALLY that person and all those other extenuating circumstances that would make that issue more difficult to deal with. Such as a person with advanced MS (Primary Progressive, etc) or a physical deficit try to walk up stairs or play with their children when they physically hurt or their body doesn't respond like a person with no physical impairment would. Although a person looking from the outside might not truly understand, a person who experiences these situations would know and feel a sense of disappointment when they are unable to keep up with their loved ones.
I am standing on a soapbox orating these thoughts and I know that if anyone is reading, they are shaking their head right now. I would be too! I honestly would. I would be saying that perhaps that person should not try to do things that they know they will not really be able to do. Perhaps if they had made different choices in their life they would be able to do more things that they wanted to do or that they see others doing. That perhaps they could do more if they just worked on themselves and got their fat asses up and off the couch or computer (ironic as my over-weight ass types this on my desktop computer) and did some physical activity and puts their eating implement down. These are immediate thoughts that not only come into my mind, but I am sure come into others lives. We as human beings are unable to immediately see a person without some form of internal judgment about that person's situation. If we were, we would see fewer people post photos of rude notes they received whilst in handicapped parking. Just throwing that out there.
Most of what I am typing here is bullshit. It's bullshit! I am angry. I am constantly angry! I wish I had a definitive reason I could identify and say, "See! This is why! This reason right here!" but I have not been able to figure out an exact reason. Perhaps it is because I am scared. I have not really said that out loud before, and most likely I won't do so again. I am fucking SCARED! More than anything I want someone to wave a magic wand (since I know it will never actually happen) and cure everything that is wrong in my life. Cure this damn MS. Cure this fucking Cancer. Cure the poverty that always seems to rear it's had around the middle of the month. Give me the ability to say YES to all that my kids ask and want. Sometimes they are asking for tangible things that require money and I am unable to do these things for/with them because the money simply isn't there. Other times they want something simple such as being able to play or climb with me and I can't due to my physical impairments. FUCK!
I am sick. I am sick. I am sick. Those simple words should not be something I have to say, yet I ignore them and pretend that I am fine for everyone else and people close to me seem to forget that I am sick until I blow up at something that they ask or expect me to do. They expect these things because I hide away what's really going on with me and act like everything is fine. One of the biggest things I hide is that I am scared. I am so goddamn scared out of my fucking mind that I don't even know how to say it. No matter what I say, I am scared of dying. Yes, I know, I make jokes all the time about dying and those close to me trying to kill me. The truth is I am scared. There are so many times in my life that I should have died and yet I am still here and to possibly be taken out by something that I can't control at all scares the living shit out of me. I have survived so much, and yet here I am, waiting for the doctors to give me a prognosis about the one thing that I have been terrified of my entire life, cancer. WTF!
As I typed that word, I had to try to keep from crying. Me. I DON'T cry! Yet, it is all that I have wanted to do lately when I am alone (which is thankfully almost never). This is the reason that I have ignored the symptoms and tumors and pain (when it is there) and the random pains that have no explainable origin and come and go throughout my body. This is why I have ignored them! This is why I have shown resentment towards my wife for making doctors appointments and making sure that I go to them. Making me go to a cancer specialist and asking all the questions that I don't. If I continued to ignore things, I would feel better now because there wouldn't be this limbo of waiting. I would not think about this and nothing else because I am waiting for the results from one test so that I can go to another. Waiting for that test result so that I can have a biopsy and get another set of results. Then wait for those results to discover the stage and progression. To then wait for that in order to discuss a treatment plan. Then to figure out what role the MS will play in that treatment. On top of it all, I then have to figure out who will take care of my children whilst I am going through the treatments whilst my wife is working. Believe it or not, it would kill the family faster than it would kill me by going through treatment than by NOT going through with it. Thus, if I just ignore being sick and pretend that all is well, nothing will really change and everything can continue in the routine that I have tried so hard to establish.
I just had to come back to finish typing this because I had to take a break to feed one of the twins. Thankfully Kimberlee fed the other twin so that he wouldn't be angry with me feeding only his brother. These are the little things I think about when I think of this disease affecting me. I have to feed them normally alone as my kids are in school, and if I am too sick to do that, who will? I can't be a good father and be sick. I just can't. I realized that with my MS it was going to be a problem, so rather than treat my MS I stopped those treatments 2 years ago so that I could be the type of father that my children deserve. Unfortunately I still lack in that capacity at times. I know that this will be the same way. What comes first? Myself, or my children? Who can truthfully answer that question? After 17 years of being a father, I still can't answer that question mostly due to the fact that I refuse to allow the necessary prerequisite question to even be asked. No reason to ask the question if I refuse to admit their is a problem and thus a basis for such a question.
I can't focus to write anymore and my brain has become jelly just typing all of the things that have been floating around my head. Thus I will simply end with the statement that this is life.....or something like it.