Mark and I used to go to a lot of concerts together. He loves music. That is his passion, and before I got sick I loved sharing that passion with him….conditionally obviously. We went to a lot of good shows. We saw Metallica, the one and only time I have seen them, 10th row. That was awesome. The shows that stick out in my mind though, are the countless punk shows we went to at tiny clubs in SLC. We were always there to see a band we loved, but somehow we came home adoring one of the opening acts instead. Like this one time we were at some place that doesn’t even exist anymore to see SUM 41. My choice not Marks. I don’t want y’all to get the wrong idea here. This band comes out and one of the dudes explains to us that one of the guys had just broken his arm the night before, they are down a guy but they are going to do their best anyways. Their name is BigWig, thanks for having them Salt Lake City. Right from the first riff they had me. Everything was off, this is what punk is supposed to sound like. Rough, not perfectly timed, nowhere close to being commercial, just punk. I was in love. Unfortunately, like most opening bands, they only played like a 20 min set, but Mark knew I was smitten and went out the next week and bought me the only cd he could find of theirs. This was at least 7 years ago, but lately I have had one of BigWig’s songs stuck in my head over and over with no way of getting it out. It’s called Friends, and before you give it a Listen I must mention he does swear once right in the beginning for those that may be offended. If you can’t understand what he is saying the Lyrics can be found here. All those lyrics speak to me on a very personal level, but let’s just focus on the chorus shall we? “I know who my friends are” is what he says and now I think I do.
My sister Kami thinks I’m dying. She asks me at least once a month and more if something out of the ordinary happens. I finally told her that I wouldn’t tell her even if I really was dying anyways. She freaked out. “Why? What? I need to know!!!!” But here is the thing, and what I told her: People treat you different when you’re dying. Why would I want people to be fake to me? If I was dying, I would only want to be surrounded by my real friends, the family members that really care about me. I’m the first to admit that there are a few people who using that way of thinking, wouldn’t want me around if they were dying. And I do understand that sometimes it takes people a situation like a terminal illness to realize that they actually do care, but why should it? What I didn’t realize is people treat you differently when you are just sick too.
If you have been my friend in the past 4 years or maybe even before that you should know the kind of person I am. I am a tad rough on the edges sometimes, but I’d do anything for anyone that needs it. I come off as stuck up in some circles, or so I’m told, but if ever asked would go to the ends of the earth for a friend or even a friend of a friend. If you consider yourself my friend, just take a second right now and think of something I may have done for you. I’m serious do it. Have you done it? Did ya come up with something? Or possibly a list for some of you? I know this sounds totally selfish and self-serving of me but I’m trying to make a point. I’m a giver, it’s in my nature. It is. As much as I am a total blunt, speak my mind, bitch (there is no other way to put it, I apologize for the language). Mark gets annoyed sometimes on how much I do for my friends sometimes. It must be a personality trait or something, I have always been that way and I don’t know if he is. A friend calls you with a problem they need help with something, and you just do it. They wouldn’t be calling you if they really didn’t need you. I mean call me gullible but that’s how I treat my friends and the things I ask them to do. Then there is the stuff I just volunteer to do. We all have those things we do. (I would offer examples but I don’t want to make anyone feel like they are being called out specifically.) Everything is great in friendships when you are giving all the time. When you are the one that doesn’t mind driving the extra miles it takes to see the other. What happens to the friendships when you can’t do that stuff on a continual basis anymore?
There are quite a few friends that I have grown apart from this past year. This year has been the worst so far for my health. I can’t drive much, I can’t go out like I used to and everything seems like it’s off-limits to me. I don’t know if it’s just cause people don’t want to hang out with some one that is disabled. Perhaps they just were using me for all the stuff I did for them. I know this is a horrible way of thinking but, I have started to really take a close look at which of my “friends” have stuck around and which have bolted now that I can’t help out with so and so project every single time. The results of said scrutiny are not pretty, readers. We have already discussed that I am of the female species, so I may be being a little bit sensitive here. I mean, my feelings are involved. These are people who I would have opened my house to if need be, done anything they needed, but where are these people now? I’m not saying I’m perfect in any of my relationships with any of my “friends,” hell, even my family but I would like to think that I have always been there when there was a real need. I just don’t get it. Another thing that eludes my blonde mind is complete ignorance.
I have been dealing with my illness since 2007. I had surgery in 2009. Since then things have been getting worse and worse. In these “friend’s” defense, I have been really good at hiding pain over the past few years, this year I haven’t been able to hide it well at all. Nor have I been able to hide my other symptoms. It’s hard to hide that you’re sick when you can’t walk up a flight of stairs, but all your friends can. It’s hard to hide that you have a migraine when every 30 min at a basketball game you are popping another pain pill. I still try though, heavens do I try. I appreciate it when a friend of mine whom knows I’m in insurmountable pain, asks how I am doing, knowing full well I’m either going to lie to him/her, or tell him/her “awful”. He/She never pries, or calls me on my lie, just tells me he/she is glad to see me at the game and that’s it. I know just from that small encounter that, that specific friend is there for me anytime I need. He/She knows that I’m feeling horrible but somehow he/she knows I hate to make a big deal about it. I don’t expect all my friends to be that intuitive, but when they ignore that I am sick all together, that’s when I start wondering if they are really my friends or not? They continually ask me to do things that they should know I can’t do anymore. They get pissy when I turn down their invitations to said things that I can’t do. I get so sick and tired of telling these so-called friends that are supposed to know the mere basics of my illness, that I can’t walk very far, or that I can’t go out all weekend. It’s a sad day when you realize that your ticket rep knows more about you than some of your “best friends”. I should mention that Cory, being the absolute wonderful man that he is, has taken the time out of his busy life, at least once, and has read this blog. I have no idea which of my “friends” have done that. Maybe you just aren’t that interested in what is going on in my life, that’s fine. This blog is for those that care to keep up with what is going on in my life, how hard it is to have Chiari, and what it feels like to be me. Just don’t expect me to run and dive into the latest greatest in your life. (ahh are ya seeing the bitch part now? 😉 )
Obviously lots of you readers do care, I mean duh why else would you be reading right? So I’d like to take this opportunity to apologize for my absences. I really want to be able to be at all the great stuff I have been missing. I really do. Most of you live in Salt Lake, and although like I said above, I try to hide it, it’s getting so hard for me to drive that far. On a good day I have no problem driving up. Driving back is the problem. What are we doing? How worn out am I going to be after? Last weekend was the Red and White game, directly after (actually during, I was just way late) I had a baby shower to attend in South Jordan for my cousin. It was totally on the way home, well sorta. I didn’t leave my cousins until 6…….I had left my house that morning at 9:30. That drive home was dreadful. And that was on a real good day, very minor migraine and other symptoms. I’ve never had an aversion to driving up there to come see all you guys, but now things are different. I just can’t always be the one to do it anymore. Also please don’t think I don’t care or something, just cause I’m unable to do all the things I used to for you. I promise if you ever really need me, I will help in the best way I can. Friendship should be a give and take. Im done with just takers. If you have nothing substantial to add to the relationship, and if it feels like all you do is take from me, you are not worth my time anymore. I only want to fill my life with quality people. Because let’s face it, when your sister says you’re dying it’s all about quality of life. 😉