It seems like it has been forever since I have written about what this blog is intended. I wanted to do two things when I started this, bring attention to a rare disease and share some insight into what my life is like because of Orthostatic Tremor. Most of the time, I have given my best version of the goal. Sometimes I have failed, including going into a brief hiatus from writing altogether. Those times were not fair to me and definitely not fair to all of you who have praised me for not only for my writing, my attempt to be an advocate for OT, or for the bravery that I’ve shown by putting my life on the smallest of stages. I’m here today to state that some of that is a fraud. Yes I have OT, Yes I do share my life and feelings on a public forum, and yes I do believe I have some writing ability. What I haven’t been true to is in the sharing of my personality, my family life and the failure that I have been at many levels. While I have shared a good bit of my personal feelings, I have not shared as much as I believe I should have in some instances. I have not shared my family’s feelings towards me with this disease or my own feelings about them.

Last year, 2018, was one of the worst and one of the most influential years of my life. I had probably dropped to the lowest points of personal depression that I have ever felt. It affected most areas it has continued into the present. Hard to believe from someone whom my audience has claimed to be so positive. I do try to stay positive, but most times I err on the side of thinking things will never work out in my favor. Notice I didn’t say my family or my support group, but in MY in favor. Most of you do not know me very well. Like all people I have a side that I let people see and a side that is private. Known to only myself and my immediately family. For those of you who do know me, what you see most times is what you get. I do not sugar coat my feelings or opinions that I may have. I hate the era of political correctness that we live in these days. People need to have thicker skin. Your going to die because someone doesn’t like what you like, think like you think, say or do what you say and are doing? Surprisingly enough most people don’t care about anyone or anything unless it is directly happening to themselves. Which leads me to another point.

If you know me very well, I have an eclectic variety of interest. I am one of those people who has too much useless information, or at least that’s what I believe. One of those interest is in not only practicing organized religion, but to the history of religion and faith itself. One of the topics that has fascinated me for a long time is the origin and the discussions regarding the 7 deadly sins. These are the most vial of sins that a human can commit to their selves according to the early works of Chaucer and Dante. I will not continue on a history lesson that nobody but me would care about, so I’ll just list the seven in no particular order: Pride, Greed, Lust, Envy, Gluttony, Wrath and Sloth. I’m sure most of you have heard of at least some or all of these sins. If you don’t, Google them. Why do I or why would I think that any of this is relevant to this blog? Because, I am guilty of one of these sins and it will and has already destroy me as an individual.

Greed, yes I would like to have the finer things in life, but to be honest, I’m writing this entry from a make shift office in a dormer in my parents house. Every person’s dream. Lust, we are all guilty of this mildly, don’t lie to yourself. Envy along with greed are close enough for me. I and you have thought about having what others have. Gluttony, I love to pig out as much as anyone else, and I’m not always talking about food. Wrath, is tricky. I don’t want to harm anyone that I have come into contact with, al least I don’t think so. Sloth, we are all lazy at some periods of our lives. That leaves one, the one that is leading to and will ultimately lead to my demise, so to speak. PRIDE

So what’s the big deal. You should be proud of yourself and your accomplishments. No, this is not the Pride that we are referring to at this point. Pride, to the extent that I believe that most of the time I am right and if you don’t agree, well basically you are wrong and at worst an idiot. Sounds great for your all around great positive guy. An individual that recently, and many other times, people have said, “that Matt is such a nice guy, everybody just loves him”. Now, I’m not the anti-Christ, at least I haven’t been confirmed as yet. I love talking to people…..strangers. My family a different story. I am very tuned into shutting out the most important people in my life, my family. My friends I truly believe love me. They should, I pay more attention to them than my family, by a long shot. I have built a gigantic wall around myself, that no one can penetrate. You will not hurt me. I won’t let in to do so.

I was broken well before I started having noticeable OT symptoms. Did anyone notice that I said I was writing from my office in a dormer in my parents house? There is a simple reason for that. Since July, my wife and I have been separated. I was tossed out because, I was miserable to live with. I didn’t communicate on a personal level. I can talk to you from this blog as easy as walking down the office hall. I can have stimulating conversation with someone I just met, but didn’t have the time to talk to my wife about anything. Why would I do that? I was always the most important person in the room because I have OT and people should only worry about me and my needs. I have three great biological children. They are young and I worry that they are not as great as people think, because their mother and father can not have a 5 minute conversation about how the day went, what needs done, how are you today? My fault again. I also had a step-daughter who is 16 and I have basically helped “raise” her whole life. She can’t stand me. I was too hard on her, much more than the younger kids. I didn’t know that until I was told after it is now to late. You should be asking me how I feel, what I need, what you can do for me? Now many from the outside in my circle, make comments that she left me at my lowest point, and forgot about the in sickness and in health part of the vows. Some of that I believe is true. She was not getting the help or attention she needed, because I am the one who is sick. Does that make it okay? No, I don’t think so, but do I understand? Maybe. I think she left me at my lowest point. But, :then again if I am a terrible husband, father, and partner, maybe it makes more sense. Will we be able to mend fences? No, not completely. There are many scars and we won’t even talk very civilly now at this minute.

So what the hell does all this have to do with my OT. I think I made a few points in all this rambling. Some people (ME) who are sick with either a terminal or life long disease forget that we are not the only ones are sick. When a family member is sick, the whole family is sick. You would think that I would know that seeing that my sister was killed by cancer and died at the age of 36, after fighting for 5 years. Us sick folk are self-centered. My sister was the least that I know of, but she wasn’t perfect either. This is the Pride that is killing me faster and has made OT the boss in my life. Nothing matters if someone is not thinking about my illness. If you are not, I’ll make sure it comes up not so casual. Don’t get me wrong, OT sucks. It sucks more because people can’t always see it or don’t even believe there is anything wrong with you. But, sinful pride runs my life most of the time. What am I going to do for me today, because I might not have that many good days left. There was a bible verse that was part of mass, this past Sunday, 1, Corinthians chapter 13 that talks about love. You know it. It is from the Apostle Paul whom describes what love is in 15 simple statements. I was going to break that down, but since I have been writing for 7 hours, joke, I will save it for another time.

My long-winded point is that if you have character flaws when you are healthy, they become much more exacerbated if you are chronically ill. For me Pride has ruined my life thus far and I did it to myself, because I am more important. Sounds terrible when you write it down and read it. There are no apologies, because nobody believes you anyway. This makes it worse for me obviously and by the way that’s all that matters, my feelings.

I hope you are still awake after this book. I thank you for reading and sharing my message for myself and all other chronically ill people. That I do believe. I will get back to OT, but things need to be said.

God Bless—-Matt

M

3 thoughts on “Time to get real. Updates Feb 2019

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.