That's a common question when your, lets say, 15,16 maybe a little younger or older. By my age people expect you to know "who you are." Unless you're in some mid-life crisis or some cataclysmic life altering event. Truly though, who defines who you are? Or what defines you? I think it is the person of your inner core. The part that never changes, but can be built upon, shaped externally, and constantly developing a newer (and hopefully better) "you".
When I was young, I thought "I' was defined by the "hats" I wore. (Although at the time I didn't know this had a name). Daughter, student, teacher, & friend. When the "hats" were added to, I also became wife, then mother. You get the picture. The thing is, when I could no longer "wear" a hat, whether by choice or forced submission, I had a hard time defining "me".
I believe much of my loss as to self definition came because the way I viewed myself changed so rapidly, without warning (so I thought), that it threw me totally off balance. Then I was, LOST. Although I searched rapidly to find that one sure footed place, the one that didn't shift and move, it alluded me. I slid rapidly down the slope of the unknown, being tested, refined, re-formed if you will.
What happened, you may wonder.Such a life altering change of perception came with the full impact of a disorder I had just recently found out I had. It wasn't the knowledge that this shaped my genetic make-up in of itself, but rather the impact of my abilities, capabilities, & functioning. I found myself, miss A type personality, perfectionist, capable of all that I set my mind to, BETRAYED! Yes, this genetic flaw, this one small falter in my DNA, took me down.
Looking back, I can see the warning signs that I didn't know were there. At the time though, they were small whispers floating in the wind. Barely there but gnawing at the edges of my mind. (That hurts) I'm strong, I'm young. (I'm tired) I can push through it. Sleep more later. (I don't understand) Study harder. Concentrate.
On and on the argument went until CRASH!! I would ask my Mother "when will I know I can't work anymore?" She would say "if you have to ask if you've crashed, then you haven't yet." I didn't "get it" until it happened. There I was, losing it all. I tried SO HARD, I thought that through effort I could pull it all together as I had before. My body said "NO!" I said, come on just a little bit more, we'll go this way instead." My body said "no!" Oh, come on already, it can't be that bad. My body screamed at me, no more gentle nudges, no more hints, just shut down.
Now, the average person might understand this as, maybe I need a vacation, or perhaps let me change to a career that's less demanding. This just wasn't the case for me. I had tried those things (obviously they failed to have lasting benefit).
How bad could it be? You may ask, I asked. WHEN you get lost driving home the way you always drove home, and have a panic attack bad. WHEN the effort of getting out of bed makes you break out in a sweat. WHEN your heart begins to race and pound in your chest until the room begins to spin because you dared to walk across the room. WHEN you get locked in the bedroom because you don't have the strength to turn the doorknob. WHEN you loose your voice and have to whisper. WHEN your husband must feed you because your hand shakes so badly you can't get your food into your mouth. WHEN you can only eat Jello because you can't swallow food because your throat won't work. So, that is why I say WHEN I CRASHED.
So, that was my true intro to HEDS or, Hypermobile Ehlers- Danlos Synrome. A connective tissue disorder, I don't make enough collage. You know the stuff your body makes to hold things together. Then became my journey. Who am I?
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