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Marcelo's Story.!
By Karen Lynn Vidra, The Texas Tornado   


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A young Mexican-American man with a disability shares his story.

Marcelo Antonio Rivas is my name.  I am twenty years old.  I live with mi familia in Saragosa, Texas.

I do not work.  I collect disability.  I get a check every month from the government.  I have muscular dystrophy, which has put me into a wheelchair because my muscles have become so weak.  I can no longer walk.  I worry about this all the time because every day, every week, every month, I seem to lose more strength, and I am scared that I will be gone before next year or so.

I am not ready to die.  I have a lot of living left do do.  I am only twenty years old; I'm just a young person who would like a future.

I have my mamma and my papa.  I also have my brother, Hector (he's seventeen) and my two sisters, Mariposa and Anacani, who are fourteen and ten.  They are very sweet, and I love them all so much.  We get along very well with each other; we are extremely close.

Since my muscular dystrophy got bad, they've really rallied around me.  They take very good care of me, and they worry as much as I do about my body, let alone, my health.  I wish with all of my heart that a cure could be found for muscular dystrophy (for all muscle diseases!), so mi familia would not be so triste.

I like to read, watch television (wrestling my favorite), go fishing, go on walks (me, I go on rolls; I wheel myself everywhere with my electric wheelchair!), and visit friends/family.  I don't really do that much because I get tired easily.  I sometimes sleep upwards to fifteen hours a day, and sometimes I have three naps in one day.  My body just won't let me do much without getting extremely tired or weak, which only seems to aggravate my muscular dystrophy.

At night, I have to use oxygen because my lungs are starting to become affected.  I am really scared about this because once the heart/lungs go, then that's it.  Finito.  Kaput.  I'm done for.  Yet in the day, unless I'm sick, I don't use the extra oxygen, but I have it with me at all times, just in case I need it.

I used to go to MDA camp when I was younger.  Now that I am too old, I sit at home most of the time unless we go somewhere, or unless I have another stupid doctor's appointment or therapy session.  I hate doctors and therapy: why do I even need them when all I seem to get is bad news? It doesn't really make any sense whatsoever!

Well, I am getting weak again, so I'd best go.  I will write in here again soon; until later, this is Marcelo A. Rivas saying adios! Hasta luego!

~Marcelo.  :)



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