Everyone who has taken a flight in the past decades has heard this instruction. The reasoning behind this advice is strong. Make sure you secure your air supply before helping someone else attain theirs. Now, referring to ‘air supply’, I’m not speaking of the duo that was ‘making love out of nothing at all’ back in my early teens. (Yes, I realize I’m dating myself, here. I don’t give a damn!) I’m talking about putting yourself first, in certain situations. The logic supporting this instruction is, if you try to help someone else secure their mask, you will probably pass out before you can, and be of no help to anyone. This causes a situation where you both die of oxygen deprivation. You were righteous, and put someone else’s needs before your own, and as a result, you are now a pair of corpses. Congrats. You will be honored by the living. That is, if anyone saw you perform this misguided, selfless act. Odds are, if you are in such a situation, things are so hectic, no one has. So there goes the only upshot result to your deed.
The point I am terribly stumbling to make is this. MS causes you to need to apply an proverbial oxygen mask often. Sure, people you care about may need one as well, but you’ve got to be able to put yourself first, or else you may never be able to be there for the ones you love. For those of you who have trouble putting yourself first because of the fear of being self centered, I’ll give you my way of looking at it.
I know that the world does not revolve around me, but my world does. I am not the center of the universe, but I most definitely am the center of my universe. That’s not self centered. It’s a fact. And it’s as much of a fact for you as it is for me. Hell, it’s a fact for every sentient being who walks this earth or wanders the heavens. Each individual has an effect on the world one comes in contact with. In turn, The environment effects each individual, well, individually. You, my friends and loyal readers, are the center of your universe. Or, at least, you SHOULD be. The only soul who has known you from the moment you were born, through every experience or thought you have ever had, to every emotion you have ever felt is YOU. You have to be your own best friend. And what would any good best friend do in a time of need. He’d have your back.
Trust me. I know how difficult it can be explaining to someone that you really, honestly, truly want to hang out, but you barely have the energy to get up to even make a bite to eat. For me, I still have that voice in the back of my head telling me, “Crap. I haven’t hung out with them in a while. They probably think I’m avoiding them.” I’m sure many of you recognize that voice all too well. It’s almost unavoidable, given how often we MSers end up in such a situation. You can’t let it eat at you, though. You have a disease. You can only push it so far before you become the passed out adult sitting next to the passed out child on a decompressed jumbo jet. You’ll be no good to anyone. I don’t want that. You don’t want that. Your true friends don’t want that. Trust me. The true ones make it work one way or another.
Shortly after I received my diagnosis, understandably I was depressed and nervous. I didn’t really have the will or energy to do much of anything. I spent more time than usual sitting on the couch letting the television screen entertain me. Outside of work, not too many people were seeing me. I stayed home much more than usual. This social addict had disappeared. I hadn’t yet found a (Well, crap. The word I just had in my head a moment ago that was supposed to go here, is gone. Let’s take a moment to see if it returns…………………..Jesus. All these folks in the coffee shop probably think I’m a madman, whispering obscenities at my computer screen. Aha! Solution! The solution to my problem was the word solution. How ironic is that. That’s irony, Alanis!) I hadn’t yet found a solution to the fatigue problem, (Which ended up being D-Ribose. Thanks Amy Colton!) and I had about as much energy as a sleepy sloth. My remaining best friend from home (The one who hadn’t completed suicide, Shawn Naumann, was off the road for a few days and called to see if I wanted to get together for lunch, or a drink, or simply to talk. I told him I really didn’t feel like doing anything besides possibly taking a nap later. He said he’d be right over.
We watched a couple of movies…………….and not much more than that. The entire time he was over, we maybe said thirty words between us. It wasn’t awkward. The silence between us was in no way uncomfortable. It was just two old friends, one who was still reeling from the news of having an incurable disease, and one who simply wanted to be there for the other, enjoying each other’s company. I can’t tell you how much that meant to me. In fact, I don’t think I’ve told him how much that meant to me. I think he knows, though. I hope he knows. Shit, I should probably tell him.
You see, since he is on the road most of the time with the band that he tours with, I knew he would only be in town for a couple of days. I wanted to go have lunch, or whatever, but I did not have it in me. I could have ignored that and said, “Sure. Let’s meet at so and so for a drink and grub.”, but I would not have been good company out in public. In stead, I told him the truth, and he was fine with it. Granted, I’ve known him most of my life, and he is like a brother to me so it was easy being honest with him.
It isn’t always that easy. I have trouble with that often. Being honest and open is very difficult, at times. You may think that is odd for someone who writes down his thoughts on the internet for anyone, anywhere to read, but it’s different in person. You see, I’m naturally an entertainer. (Notice, I did not state whether or not I was a good entertainer.) I am much more comfortable with a faceless crowd than in a one on one situation. As many entertainers will tell you, that comfort in front of a crowd is common for someone who is shy in daily life. Yes. I am shy. I simply cover it up by ‘being on stage’ most of the time that I am in public. Anyone who is around me enough can tell you. I often have a script for everyday life. They can tell you my responses in many situations. If someone asks me, “How are you?”, my general response is, “Living and breathing. It seems like a good sign.” It’s part of a script. I don’t have to stumble over my words. It makes me feel confident, humorous, and honest at the same time. Usually, I don’t feel fine, as I’ve stated in an earlier post, so the line I have written doesn’t elude to the idea that I do feel fine. It states a fact. If they inquire further, I have a follow-up line. “I’m getting by.” Once again, a fact. It doesn’t go much further than that.
Many of my close friends will tell you, they find out what I’m truly feeling by reading this blog. I’m simply not good at laying out my feelings to their faces. But put me ‘on stage’, whether it be in front of a live crowd, or on the internet, and I open up. I’ve always been that way. Back when I was working as a professional musician, people were always shocked by how different I could be on stage. Especially those who have known me the longest. In real life, I am self conscience. I second guess everything I do. Offstage, I fake being confident. It’s a character I play. Onstage, I AM confident. No faking needed. I honestly don’t know why I work that way, but I do. That is why I felt the needed to create this blog. I’ve created a stage. I can openly express how I am feeling while informing anyone who decides to read what it’s like on the inside, dealing with this disease. At least, from my point of view.
In this process, I completely understand that I get the first sweet taste of the oxygen. I know I’m helping myself, first and foremost. I’m getting all these thoughts spinning around in my head out. It’s cathartic. I breath more easily, without the possibility of passing out from lack of oxygen. In turn, I also understand that, hopefully, by putting my need to perform first and foremost, I might just be helping someone else get their oxygen mask on. Someone who is out there struggling to breathe might find this blog. Me. Holding the oxygen mask out to them, strap extended, waiting for them to place it around the back of their head. Helping them to become the center of their universe, only after establishing that I am the center of mine.
Scientists have recently theorized that we exist in more of a multiverse, rather than a universe. I would tend to agree with that theory. I believe everyone should live with that idea driving their actions. If you do as well, try to keep in mind, just as I try, that even though you are the center of your universe, your actions effect every other universe you come in contact with. Good or bad, you cause an effect. You make a difference. You matter. Take care of yourself, or you may not be around to take care of someone you love.
Until next week, be your number one fan! See you next Tuesday.