foto by Pam Gwillim, AKA "Mom"
Last week I had a problem that sent me to the ER and then caused me to have to stay overnight in the hospital. This kind of thing happens to me 2 or 3 times a year due to my Marfan Syndrome. The thing that sucks is that everyone and their dog feels a need to not leave me the hell alone regarding this. I know that people care, but I really don't like talking about my health with people. There are a few exceptions to that, because I consider some of the people I know to be close friends, but most of them are not, and I don't feel like explaining to people that I am fine, I would much prefer that they didn't know that I had a problem at all. After 25 years of this, it's getting very irritating.
I know that people are generally sincere in there concern, but I am a very stubborn person when it comes to my health. I can take care of myself, I have gone through a whole lot in my short life, and I made it through to this far much do to my independent nature and stubborness. I don't like people trying to help me, I don't like people trying to sympathize with me, I don't want them walking up to me and asking me stupid questions, I don't want to explain in detail (or at all) what happened to me. I am stubborn, I am very internal, I am introverted, I am more capable of taking care of myself than anyone else, I hate sympathy, I despise obligatory sympathy, I could go on and on but I won't because I think I have made my point.
Now to switch gears. I mentioned earlier that I have Marfan Syndrome. If you know me then you probably already know what Marfan Syndrome is, if you don't know then you can google for it. The main thing about Marfans right now is that it's largely unknown to most people, even to many doctors. Right now the Marfan community is putting HUGE effort into spreading information about Marfan so that more people can become familiar with it, and thus more people will hopefully have their lives saved when they are diagnosed. Marfan is definitely a life-threatening health concern. The more people who know what it is, the more people will survive, simple as that. Also the syndrome is degenerative, meaning the older you get, the worse you get. So getting the word out and diagnosing people early in life is vital to get them on proper medication and healthy habits so that their quality of life will be better as they age. There are many more things about Marfan, but getting the word out about it is KEY at this point in time in the development of our understanding of the Marfan Syndrome.
So this is the story I find myself in. Reading above it is obvious that I don't like attention regarding my health, I would prefer that people didn't know that I have this illness. It is very alienating to know that people think you are fragile, it pisses me off to no extent. It is not a good feeling to have someone come up to me and ask me how I'm doing, it doesn't make me feel more loved, or cared for, it makes me feel small, it alienates me, and I dislike it. However, I am part of a community/generation of Marfan affected people who have a purpose. We have an obligation to make the world a better place for the next generation of Marfs. We need to get the systems in place so that they can survive, so that these people, who I don't know and mostly will never meet, can possilby have a better life than I get. This is a very serious issue to me. It is a "calling" if I may. And it has to overide my personal desires in regards to how I live my life. I have chosen this road by educating the people around me, in my life, at my work, full well knowing that the repercussions of such actions will be nearly intolerable for me at times in regards to the way I prefer to life my life. Every ignorant comment I receive is outweighed by the fact that I have an opportunity to educate one more person regarding Marfan Syndrome that would most likely be completely unaware. Every time someone barely knows me asks "How are you feeling", I can at least rest assured that this weight that I am carrying will be lessened for someone else someday.
Walking the balance sucks, and I am tired.
I was just watching a news report on T.V. about penmanship vs. typing. "Many schools aren't focusing very much on penmanship, some don't even teach it at all...". While I was watching this I had music playing so I was reading the report via closed captioning. The report went on to say, "It appears that students who haven't learned proper penmanship may have more problems with their grammer and spelling than children who have."
Keep in mind that I was READING this report, not listening to it. I laughed my head off!
I bought a book about backpacking techniques, essentially a manual for all the info you need to trek for extended trips in the wilderness. As I was skimming through it I came to a section about snakes, which I read because I see rattlesnakes fairly often (as I mentioned a few days ago). After the snake section was over I kept reading as the book went into a discussion about bears and how to take care of yourself in "bear country". This phrase caught my eye and made me laugh...
"The way to tell the difference between black bears and grizzly bears is to climb a tree-- black bears will climb up after you, grizzlies wil knock the tree down."
I Can't wait to encounter a bear while backpacking so I can find out what kind of bear it is!
Today I woke up in the best mood I've woken up to in months. It was cold. This is a big deal to me. I woke up, and it wasn't already 70 degrees outside. Just to make sure I wasn't going crazy I looked outside my window, AND THERE WAS FOG!!!!!!! I can't explain how happy this makes me. This means that the temperature is going to be getting closer to comfortable for me. The heat in SoCal is the thing I most dislike about it here. It is never comfortable during the spring/summer, and only tolerable for the rest of the time. Today signified (hopefully) the entrance of the "tolerable" season.
Smiles a round.
Yesterday, while playing a round of disc golf with my friend Trey and a few other people, I found a little snake lounging about in the far corner of the park. He was about 18 inches long and definitely not a garter snake. At first I couldn't tell if he was dead or not, so I nudged him a bit with my foot, turns out he was alive and wiggled a bit. He must've been pretty groggy because it took a couple nudges for him to really react to me. Then the little guy decided he didn't like me and started to coil up. OK, garter snakes DO NOT coil up when they are bothered, they simply slither away. However, this little snake didn't have a rattle, so I assumed he wasn't a rattlesnake. Since rattlesnakes are the only dangerous snakes that I'm aware of in our area, I decided to see what this little bugger had.
So I taunted him, yes taunted him, a bit more. He coiled a little tighter and then BAM! He striked my foot. Pretty sweet, I've never had a snake coil, and strike at me and actually get me. I've experienced the coil and the strike, but never a hit. I did have shoes on with a thick rubber toe, and the snake missed anything he could've penetrated and struck the rubber toe, which he more or less bounced off of.
At this point I decided to invite my friends over to the party. We are all pretty nature friendly so we wouldn't actually hurt the little guy, but it was fun watching him strike, Trey grabbed his golf towel and dangled it near the snake, who was still coiled and swaying back and forth. He striked Trey's towel, then my towel, then another of our friends walked up, looked at the snake, and said, "That's a baby rattlesnake" and walked away! HOLY CRAP! Here I am playing with a baby rattlesnake and letting it strike my foot! What an idiot!
I decided to count my luck and walk away!
Evidently, rattlesnakes grow their rattles while they mature, this guy just didn't have one yet. Lesson learned, don't play with baby rattlesnakes, that is bad!
For those of you interested in what the previous post was all about... The welts on my back are from a type of massage called Gwa Sha. It is a deep tissue massage that cycles the stagnant blood from the bottom of the muscle up to the surface. This causes the areas with stagnant blood to be revitalized with fresh blood, which is good for the muscle.
The massage is not pleasant, as you can imagine from looking at the pictures, but the results are great.
No pain, no gain, right?!
FYI WORLD...Tamara did this to me!
Has a new face...
(photo taken, edited, and posted in less than 7 minutes)
This is a faux Lomo test. Not sure if I like it yet.