With Randy Pausch’s passing, I have been thinking a lot about what my life is going to be about and what my legacy will be when I’m gone.
While I’m only 23, if I have Ehlers-Danlos Syndrome as my doctors have told me, I may not have all that much time left. The median age of someone with Ehlers-Danlos Syndrome is 48 years. This means my life could be nearly half over. I may not have the time to do all the things that I want to, but when I do die, I want to know my life has mattered.
Randy Pausch made a list of his childhood dreams. This is a list of the dreams I have. In some ways they are tempered by the realization of the importance of the little things in life.
-
Publish a book of poetry
-
Publish ebooks on education
-
Publish in a major education magazine
-
Publish in a major psychology magazine
-
Meet Richard Dean Anderson
As you can see, the big thing to me is my writing. Not so much for the immortality of the written word, as for the simple fact that there is so much I want to share with the world. I don’t know what, if any of the things on this list will ever come true, but the dream alone is reason enough to keep plugging along.
good to see these dreams, hope you continue to write more
I just wanted to pop in and make sure that people know that EDS in general does not effect life expectancy. There are 6 sub-types and the only one that is documented to do that is vascular. You never know who might read this and suddenly think someone they love or even they are going to live a short life.
Good luck with your dreams, and think positive! If you’d like to read about another EDS’er who is about your age and laughs at life, go to http://girldislocated.blogspot.com . It’s my favorite blog.
I have a hybrid form that exhibits elements of nearly every type.
Hypermobility type (formerly type III)
Advanced premature osteoarthritis with chronic pain
Heart valve problems (mitral valve prolapse)
Classical type (formerly types I and II)
Fragile skin that bruises or tears easily
Slow and poor wound healing
Heart valve problems (mitral valve prolapse)
Vascular type (formerly type IV)
Fragile blood vessels
Thin, fragile skin that bruises easily
Veins visible beneath the skin
Kyphoscoliosis type
Progressive curvature of the spine
Fragile eyes that are easily damaged or ruptured
Increased risk of rupture of medium-sized arteries
I also have flexible joints that extend beyond the normal range of movement and dislocations of shoulders, knees, fingers, hips, wrists, and collarbone.
I can feel my body deteriorating. I’ve known for a long time that I was getting weaker, but I still try to do as much as I possibly can.
My knowing my time is probably short makes me all the more determined to do everything I possibly can. If I’m going to burn out soon, I may as well burn as bright as I can. I’m going to be a beacon in this world, even if it really is the last thing I do.
[...] • Blog: Joannespangle’s Weblog [...]
Randy Pausch has been an inspiration to so many people. Keep following your dreams and your goals and live each day to the fullest…it is all any of us can do.
~Melissa
http://www.melissamorris.wordpress.com
I’m a poet & have EDS too. Good luck with your writing.