The Extended Sort of Hope

I can’t believe it’s actually come to this.

I’ve got to spell things out for people.

Senseless tragedy in the world and people in this small little town have nothing better to do than speculate as to how much I’ve paid for my recent treat to myself.(answer a whole lot less than you can possibly imagine~!) I drive a 20 year old car and people are bent out of shape because I went and did something to make myself feel better. I have some nerve!

I wish I was as curiously involved in one tiny little modicum of other peoples’ lives as much as people seem to be ingrained in the daily happenings of mine. Over what I am wearing, what I am doing, what I’ve purchased recently. ( which is not much, actually).

It’s so odd to me that people think that once they’ve held a fundraiser to assist with your medical bills that it somehow now gives them carte blanche to judge everything and anything that you do for the rest of your life. I swear I don’t understand people. As if I make no other income, only what I gathered at the fundraiser. As if I should never do anything else again.

Hope

I’ve gotten static about the photos I’ve posted. About how much I payed Soul Imagery to take my photos… and not that it’s anyone’s business but I will answer this…I met Kevin in a photography group. I model for him. Kevin is my friend that does photography. I’m very proud of his work and I simply love to play dress up. We work very well together. He has taught me an awful lot.

Soul Imagery Website

Playing dress up affords me a few hours of escaping my reality.Reality with a chronic disease can sometimes really suck. It’s a reality that consists of a disease that is rated higher on the pain scale than any other disease known to man. A reality that consists of intense muscle spasms that render some of my body parts useless from time to time. A reality that makes eating difficult and digestion sometimes near to impossible. A reality that makes it too painful to sleep on my ears or to stay in one position for any length of time. The realities of my disease are too numerous to list and too upsetting for most people to read or comprehend let alone for me to even mention, so I usually don’t. And unless you are my husband, or my family or a very close friend, you won’t hear me complain, either.  But because I go out of my way to look good when I leave this house, people fail to see me as sick. Let alone grasp my reality. Hope

Because I go out of my way to appear as “normal” as possible, people just don’t understand. I honestly think that some people would prefer to see me looking like death, hunched over in wheelchair, swollen, discolored and writhing in pain. To them, then I would actually *be* sick.  They only see the “best” of me because that is all I allow people to see. I don’t allow people to see me at my worst.

I allow people to see me taking photographs at my childrens’ sporting events. I don’t allow people to see me the 2 or 3 days afterward that it takes for me to be able to use my hands again properly. I allow them to see me in photos but I don’t allow them to see what I look like on days I am really sick.

This week I decided I needed a change. I haven’t been feeling my best. So, because I have access to a full compliment of womanly wishes (with wonderful employee rates) where I work part time, ( it’s a hair salon),  I decided I’d see if I could stand extensions. We were afraid they’d hurt or I wouldn’t be able to stand them for long, but it’s been almost a week and so far so good. Except they itch. A lot. So they may end up being short lived. Which is a shame, because I really like them, and I’d love to play dress up while I still have them.

natural light + new hair

I don’t think I will ever stop people from being in my business and I’m not sure why they feel that it’s ok to be so nosy and so judgmental.  Some of my close friends think I should feel flattered that people find me that interesting. I’m not flattered. I feel sad for those nosy judgmental people.  Sad because I can’t imagine what they must be lacking to be so concerned with what others are doing.  Sad because if they are so interested in me, they must lead very boring lives. People like that usually only want to feel superior to you for one reason or another, be it jealousy or be it a quality that you possess that  they can’t seem to cultivate. They will sit on their self made throne and judge you,  but in reality you know that they are only judging you for some inadequacy they have found within themselves.

I simply have no room in my reality for people like that any more.

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8 thoughts on “The Extended Sort of Hope

  1. Hope,
    I totally understand what goes on everyday in your life. First & fore most we need to take care of ourselves that includes getting our hair, nails ect. Living w/ our illness is pure hell & makes you depressed & every little boost of happiness we can give ourselves we need to do. Those days are far & few between. I do one thing like make dinner which our family needs & end up in so much pain. I’m allergic to every pain med so I suffer. To all the people who are judging, until you walk a day in anyone’ s shoes w chronic pain ( RSD). If you gave money for a fundraiser you gave because you felt you needed to.Your job is done you can stop watching every move that person makes.I’m the same way Hope no one except my family see me when I’m in pain .I would love to b the person I used to be. I hope that you & your family have a very Merry Christmas. To all of you judging remember that’s GOD’s job let him do it. Richele

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