Saturday, August 20, 2011

Changes and observations

Hi Everybody! (Said in Dr. Nick's voice =)

Thursday was interesting. I went to Third Thursday Spinners with Choperena (it was her birthday!! =) out at The Knitter's Underground. I didn't do much knitting, but I did do a lot of talking and listening to Anne Grout. She's the woman who makes beautiful drop spindles that Molly sells. She's so kind, generous and KNOWLEDGEABLE about so much! We were talking about Fibromyalgia and then we ended up on a long discussion of Hypermobility Syndrome as well as Ehlers–Danlos syndrome (EDS). SO MUCH MADE MORE SENSE in the context of my health problems. For example, symptoms I posses:
  • Never broke bones, but have shredded my ACL in my left knee, dislocated and popped my ankle back in to place (one day when I was 'skating' on a freshly waxed floor in Willard Building while wearing wool socks), I can remember being on crutches in 5th grade, having sprained something quite badly
  • Have Bursitis in multiple joints including both shoulders and possibly my hips
  • Even as over weight and out of shape as I am, I can still bend over and put my palms face down on the floor
  • I have a documented 15° hyperextension to both knees
  • I can sit on the floor with my legs stretched out and still put my feet flat on the floor at the same time
  • Certain ways I sit on office chairs, I can actively cause my hips to rotate out of the socket and "catch" when I try to stand up. This is quite painful when I stand, so I have to be conscious of how I sit.
  • One doctor told me I exhibited lumbar lordosis that appeared to have been congenital
  • Raynaud's fits as well as having been told by phlebotomists that I seem to have more 'gates' in my blood vessels than normal. I'm a difficult 'stick'.
  • I have a special power with my fingers... Observe:
I can, essentially, lock my finger tips and cause my fingers to bend backwards slightly. My mother can do this as well. It was great fun to do that to me as a child whereby I would commence screaming because it freaked me out something fierce.

Of course, once I discovered I could do it too, I could go around freaking other people out. The only problem is the longer I hold that position with my fingers (all 8 fingers can do this, only my thumbs are exempt, but that's partially because of the CTR surgery) the more they become locked, to the point I have to forcefully unlock them. They will try to return to that state for a few seconds afterwards. It's not painful at all, just annoying. The important thing is that I can do it at all. Compare my photo to the one from Wiki on the topic of hypermobility... All this time I just thought it was just my family that were freaks!

So, having established that I'm quite Hyper-mobile, I go on to do more research about EDS. Interestingly enough, I was on to something back in the beginning and spring of '04 when I was physically my most broken. I had done some research on Ehlers–Danlos syndrome even then. At that time I even tried to talk to Demented about it, but... well... the conversations never went well... I still have the print-outs from the medical abstracts and informational sites about the condition. *shakes head* even at my most mentally borked I was sussing out this medical jargon...

After educating myself more, I postulate that I experience Type 3. However I have strong suspicion that my Pap Carson [mother's father](died from massive burst aneurisms) and Uncle Jay [mother's baby brother] (died at 21 from end stage Lupus complications; organ failure) had Type 4 because of the vascular involvement in the nature of their deaths. What I find most interesting and more frightening is this is also appearing to following the PPK line of inherited chromosomes.

EDS could potentially be the root of my fibro! What I do with this information is beyond me at the moment. I'm still trying to digest it all.
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So, after that brief medical treatise, I move on to my family life. I found this hiding on my laptop and thought, "you know what? just post it." It's me thinking through my life as a child relative to my parents... I wrote it back in February of this year:

I think Dad's death broke me so badly that emotionally I sort of died too. The concept of death had hit home the previous year when Uncle Jay died from lupus complications. I understood that people go away and we don't get to see them again sometimes. but then Dad died and it was a whole other thing now. I was told that Dad and Uncle Jay were up in heaven drinking beer and fishing


Mom was seen as the authoritarian figure in my life growing up, possibly because 1) after Dad died, she had to be the only one to discipline me and 2) she worked in a prison. Working in that prison as the Night Nurse for so many years began to take it's toll, negative energy and the bad side of people, she became even more misanthropic, if I think about it. She was usually withdrawn into her self. very "even keeled" in front of me, occasionally angry, sometimes sad, and rarely genuinely happy. That's what I saw life was expected to be, you should be rock steady 99.9% of the time. Wavering for traumatic events is acceptable, however, but only for a very short period. The practical adage "Life goes on." is sorta the mantra of my mom's side of the family.


That has lead me to have formal relationships with people, but not know how to get close to them. Physically, there was always a huge personal space issue and and in mentally, I didn't know how to connect with someone. I had already disassociated earlier in order to deal with the Dr Jeckle/Mr Hyde father.


I lacked the mother who was involved in my life, other than reading together or shopping… there wasn't that 'softer' side that some people have, where they take a detailed accounting of everything that has gone on during their day, TALKING on the phone (now email, chats- people are still connecting but the medium by which they do it has changed. Skype, iChat, etc.) and discussing details and gossip of the day. She wasn't active \in/ my life, we did that for a few minutes only, the rest of the time, I was in my room puttering around and she was out in the living room with a book or her diary and the TV set to channel 4 which is our local information station that plays a local radio station over the TV. Remember, this is the 80's and early 90's so it was kinda high tech…

That's not to say she didn't praise me when I did well. She did. I remember a painting I made in 92/93 on the back board of a HUGE mirror I had. I took the mirror out of the frame, and on the thick pressboard back, I finger painted. a dark background with brighter colors tipped with white all swirled. I have to admit. I'm kinda proud of that. I remember making it and Mom went kinda crazy about it. We bought white spray paint and painted the frame glossy white. Once everything was dry, she took it and hung it on the wall. I remember feeling for the first time that my mom REALLY understood and appreciated me and what I do.

Just thinking now about that statement, that she understood me for the first time. It makes me realize that a child's independence must be a hard thing for parents to deal with. Knowing that this child you are interacting with is learning all the time what to do and how to be, till at some point, after having mimicked the behavior, adopts that behavior as acceptable and amalgamates it into their personality. It's hard to know exactly when they understand the nature of things like love, and morality.


I never learned how to deal with anger or confrontation because I learned at a young age it's irrational and you get hut when someone is angry. So to this day, I generally cower when someone gets angry. I don't know what to do about it because my brain goes into flight mode almost automatically. Even when my neighbors are fighting (yelling loudly at each other about something) I feel the need to curl up in a ball and cry. It's really fucked up.

When MY anger comes out, I feel like I turn into the Incredible Hulk. I feel like Billy Bad-Ass. I can take on anything and beat it. Unfortunately, somehow my anger turned in on itself and feeds on my heart. My anger and need for destruction, pain, anarchy, all the thug-like tendencies attack my self confidence. My image of myself is distorted through shattered and crazed glass smeared with burning napalm.



I have no voice. I am like a peacock, I display my plumage and expect that to explain who I am. The clothes I choose to wear any given day, what I eat, what I listen to, with the things I pick to surround myself, even what I do. It all speaks volumes about who I am.


As always, it's stream-of-thought so it's a tad disjointed, but even that says something about how my mind works.
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Finally, I'm busily working on Cephalogal's shawl. I declare it the most monumental thing I have ever knit. I must say, I have a tiny bit of smugness that I've been able to do it. =) It's got literally 5 more rows left then The Cast-Off of Doom. A little over 600 stitches to be cast-off. It's EPIC!! and I'm completely psyched up about it.


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