NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Spoonie Art Contest! › My Spoonie Art Contest entries comes from my love of writing, photography, and oh singing also.
July 31, 2013 at 12:03 am #504
I am not sure how many pieces that we can enter in the contest so I will follow along with others that have shared more than one entry and will do the same.
Please note to view my links, in case you don’t know how, first try clicking on the link (although it is not working for me as it takes me to an empty page)if that doesn’t work then click on the first part of the link then move your mouse over to the end of the link,then right click and click on copy, the go to a new tab and paste the link in the address bar and press enter, the link will pull up.
Yes, I do stay up late at night, or way past early in the morning and of course Dr. Diana is right, I am usually working on something. 😉
I love to write, I have been writing poetry for a long time and I especially love to write for children. I also love to read stories to people and kids, I guess it is my little bit of a drama queen shinning through. It seems that I can’t on just on area so I will share a few of them with you.
The first is of myself singing a song that I re-wrote, and it is about being afraid of my future but yet what I have to look forward to after living life with EDS. Here is the link to the youtube video:
The second piece is a poem I wrote when I was in a rather dark place and I was questioning a statement that I once had heard. I wonder how many feel the same as I do, like I am just a giant freak and am truly flawed but on purpose or not? Here is the poem:
By Amy Hosp
February 20, 2013
Someone once said that I am intentionally flawed to make me unique.
I say I am too weird and that others see me as a freak.
No, not a freak in an eccentric kind of way,
There is nothing interesting about the freakishness that I am, in any way.
Where and when do I fit in? Let me count the times and places
Oh yes, there are no times only really long spaces.
Spaces of emptiness where I am all alone,
Stuck in my differences, like a statue made of stone.
Why is it me who must carry this load?
Why can’t I get up and walk down a different road?
Why can’t I have a life in the norm,
Instead of a life that seems to have been destroyed by a storm?
A life where God does not trust me so much,
A trust from God, in me, I was told, that allows me to carry such.
Such a difference that sets me apart,
Not in a positive way, like if I were smart,
But rather in a way that makes my life and my body looks strange,
A life and body that is way far out of normal range.
Do I have a choice to continue on in this quandary of differentness that haunts every thought that moves through my head?
Do I have the choice to decide if I want to be alive or dead?
The person who said that I am intentionally flawed to make me unique,
That person should have seen that I am nothing but a very disgustingly flawed giant freak!
The last one I want to share is a reading of one of my favorite stories. I love to make people laugh and have a good time and I hope to do that through this story. Here is the link to Ole Dry Fry:
I also love photography! Here is one of my pieces from my website. You can see more photos available for sale at:
July 31, 2013 at 1:37 pm #3993Lea AnneParticipant
God doesn’t make disgusting freaks! 🙂 That being said, you have a wonderful way of expressing yourself.July 31, 2013 at 10:37 pm #4004
Yes, you are right, I know that God doesn’t make any kind of freaks! I know that I am not a freak but I sure do feel like one sometimes. Thanks for the complement. BlessingsAugust 1, 2013 at 9:51 am #4012Dr. DianaKeymaster
This SO touches my heart, Amy! Tremendous! 😉August 1, 2013 at 10:27 am #4018
:)Thanks Dr. Diana!August 1, 2013 at 10:02 pm #4024JenBParticipant
Beautifully done, Amy!August 1, 2013 at 10:33 pm #4025
Thanks!August 2, 2013 at 5:32 pm #4034BarbaraParticipant
I think we are a creative bunch and let’s face it, this condition does stir the emotions somewhat and certainly drives the passion, both are catalysts for creativity. I watched some of your video’s too, it’s good to document what we’re going through. I think we should all do it and expose this horror of a condition, for what it is.
Watching your singing video prompts a question, as you can still obviously sing very well. I have lost my singing voice, much to my despair as I loved to sing along to Barbra Streisand. I can still sing in a fashion but don’t necessarily hit the right notes (although I don’t know I’m not going to hit them!), Sometimes I sing 2 notes at once (weird), I also run out of breath all the time! I wonder how many others any of this has happened to ?
(UK)August 5, 2013 at 7:03 am #4045
Barbara you are very sweet. I know that forever if I sing for a long time I lose my speaking voice but with my singing voice I can sing higher notes. Who knows? I have heard others say that they have lost their singing voices. Try googling Ehlers Danlos Singing Voice Problems. I found some great sites there to look through. It does sound like you are not alone.September 19, 2013 at 8:56 pm #4392Dr. DianaKeymaster
So true — I lost my singing voice (not that there was anything there to brag about to begin with!), and will often lose my speaking voice, or it will be very weak (as many of you have pointed out about the volume on my videos. ha). Amy, you sing like an angel (and you act like one, too! NOT an easy feat, when we deal with all that we deal with…). Awesome posts! 😉September 20, 2013 at 6:16 am #4395
Thanks so much Dr. Diana. I don’t always act like an angel, just ask my family….lol…. anyway, I think laughing is much better for me than crying although I do my share of that also!
I do have trouble with my singing voice although in this video I had a sore throat but the trouble I usually have is after singing for a bit, I can’t speak well, my voice gets weak and I think that it is the voice box muscles reacting to being used, just like my arms when I am putting my hair up, I have to stop and let them rest before I can finish.
There are times as well that I just don’t have enough air to finish a sentence and I feel like I am choking.
Interesting to think about the voice with EDS.
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