Nov 192011

it’s saturday morning and i’m at work… now it used to be that this was pretty normal… but not anymore… i do the monday to friday 8-4 thing… after 20 years of shift work i made it to normal LOL

but there is much OT to be had and coach & i need the money so here i am… at too-freakin-early o’clock  working hard on a saturday morning… poor me… i have to stay here all the way til noon! sheesh ha

last night coach & i went to watch a playoff game… it was cedar park v hays… cedar park crushed them… we left at the bottom of the 3rd and the score was like 42-0… crazy… cedar park is going to be a team to reckon with through out the playoffs… and lake travis too

spoke to a new friend last night… his brother is very sick… he has something called Friedreich’s ataxia… very sad.. he’s very young.. maybe 30… in a chair, difficulty with speech, heart problems… but his biggest disability is fear… he is afraid to live.. he is afraid to do anything because something might happens… an attack… my new friend is angry and hurt and feels helpless… he can see that his brother needs to live… the brother has been ill since he was 7… diagnosed around 17 years old… and rapidly progressed in the disease… the parents are riddled with guilt and coddle him.. they do everything for him… my  new friend tries to make the brother do things for himself and that pisses everyone else off… i felt so bad for him… his brother is so angry and so dependent and so afraid that he is living in this cocoon of disability… no quality of life at all… and his mind? incredible..the brother is beyond intelligent.. and very frustrated… his mind works but his body is compromised…

in the meantime, jan & i have been doing photo games… we take turns picking a subject and we each then submit photos on a specified day… it’s fun… and it’s getting me back to looking at things around me in that different way… last week i picked… i’m not really all that clever when it comes to picking subject matter… so i picked “kitchen” and added “monochrome” to it… now,  don’t ask me why i picked the kitchen because mine is pretty much always a wreck LOL but here is what i came up with:

i know.. it’s not monochrome…but it turned out way more interesting that i thought it would….

here is my monochrome submission:

when i was shooting for money, and shooting all the time… well, monochrome and black & white were my favorites…. i just love it… and high contrast, with some dirty gritty grain in there too…

go check out jan’s shots… she’s much better than i…

have a great saturday y’all!


Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  14 Responses to “fear is disabling”

  1. I lost my best girlfriend of 26 years to Friedreich’s ataxia. She was amazing! Her siblings passed away in their 30’s of it but she managed to 56 years old. Her humor and raising 4 children with great support system. This man I feel so badly for.
    Now your photos are sooo good..the drizzle of water has given me the urge to go to the bathroom. Faucet potty trained is BAD!

    • i feel so bad for this man… and his brother is grieving so much right now… i don’t know if he will ever find a way of reaching out to his brother that will have an impact… so sad

      oh the running water! gets me every time… although, simply knowing i’m close to the bathroom sort makes things start flowing before i’m ready… dang beast!

  2. touching about your friends brother. I know this fear from both ends. At the height of my hospitalization and for months (years?, sometimes even now) after I was terrified that one step would kill me dead. It was a commitment practice to put that fear aside. The other end is my youngest daughter who was born with heart problems and coded out twice. I was terrified she would die and hovered way too much. One sneeze and I was off into fearland.
    Miraculously she turned out to be normal in spite of me but that hovering (like your friend’s parents) thwarted her self-confidence to do things on her own. She also had to work hard to overcome that.
    Fear is a killer.

    MOney, MoNey, muhniii- – I just started working recently. Money is so tight our life is constipated. Wow, that’s damn clever Paula. Anyway, I’m working with a women who sells organic veggies and fruits and meats at green markets. lots of heavy, physical lifting, setting up, taking down. I love the work, she’s great, the markets are fun BUT the big but is “Help me Lord my body is crying”. But ya’ gotta live. Ron is working the markets too and several other $ producing jobs as well, all part time, not every day. Oh beautiful for spacious skys . . . . . . . . . .
    I love your photos. I guessed right it’s water! great shot.
    sending you hugs.

  3. That water is beautiful. A really glorious shot. Thanks.
    Early after my diagnosis I decided that I could have a life, or I could have an existence. Having a life means pushing the boundaries, and yes, it does mean that I hurt myself. I feel so sorry for both your new friend and his brother. I think your friend is right, but I do understand his brother’s fear. However, I feel that if he allows the fear to dictate how he lives, he is giving it the victory without a fight.

    • My friend is at such a loss… he doesn’t know what to do to help his brother find his way out of this dark anger place… and I can imagine how frustrating that is. It seems that the brother has been enabled for so long by the parents that he’s just stuck there and in that routine…it’s as if he expects this level of care (which is not entirely needed) from everyone… and he’s angry…

      My friend believes that if his brother would do more for himself he would be happier, and I tend to agree… Doesn’t sound like it’s going to get to that point though, unfortunately…

      I push myself… I do much more than I should … but I hate to give in just yet… so I fall, stumble, beat myself up doing things that I should have help with.. and I go go go until the fatigue is so great that I collapse… most likely this is not the best thing for me 🙂

      Color me stubborn 🙂

  4. Love the shot. It does look like glass. Fused glass… (which I love!) I like that you guys challenge each other. What a great idea. =)

    • Oh Sherry! It is sooo much fun! You really should join us in these weekly challenges… you have your camera back and repaired right? Come join us! I think what I like the most is that I’m taking more pictures again, I’m looking at the world a bit differently, and it gives me something to work on, develop and such… a skill…

      This weeks challenge is GONE… a picture of something that was once there but is no longer there… we are posting our pictures tonight on google +… it’s just Jan & I … we’d love for you to join us!

  5. Cool…love the water!

  6. I feel bad for your friend, but I think he is right to have his disabled brother at least try to do for himself before getting help. Back when I was newly Dx, and very disabled, my brother was the one who set the limit with me that I try at least three times to do … whatever, for myself, before he would help me. I often found that by the third try, I could actually do for myself. My parents, on the other hand, never struck such a bargain, and it soon became very tempting to ask them to do something for me that I knew full well I could do myself. Yes, disability does f**k with the mind/s of everyone concerned.

    As for your photo — Brilliant! The tap water looks like blown glass. It’s beautiful. The monochrome, while not so beautiful, is interesting. Nice way for you and Jan to challenge each other.

    • these little challenges are fun… i think we both are enjoying ourselves…the water was interesting and turned out much differently than i expected…the black & white is not so interesting… you are absolutely right… it was the only spot in my kitchen that was clean enough to take a picture of LOL … that is just plain ol sad!

      i sometimes think that disability is harder on the caregivers than the person living with the disability.. it seems caregivers either go overboard or don’t do enough…but it’s also the responsibility of the person being cared for to let them know honestly what is needed …

      it’s just all scary and big and horrible

  7. Have no fear dear…….WW is here!
    Love those shots, keep up the good work.

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