Success in the midst of chaos

I haven't written much lately as I have been writing more in my caring bridge journal at: http://www.caringbridge.org/visit/jenelle

Simply put I am surviving. A friend gave me a sticker recently that describes how I feel most days.
List of things to do today:
1. Get up
2. Survive
3. Go back to bed

My life is hard...with pain...dystonic attacks...chronic vomiting if I eat...infections...IV nutrition maintenance...feeding tube issues...fatigue...spasms and the list goes on. I survive by finding joy and happiness with my family, friends and what I do have to be thankful for.

My son is the joy of my life. He is growing up so fast. He talks all the time and loves telling me about everything. He is in awe of all that life has to offer. For example...crafts at preschool...caterpillars...rocks...spiders...dirt on the floor...the clouds...the sun...trees...cracks in the floor...friends...love...books...hugs...coffee and bagels...ice cream...snacks...rolly polly bugs...sticks...poop...flowers...bubbles...afternoon walks...playgrounds...the park...spit...toothpaste...baths...toys...stickers...grandmas and grandpas...picnics...spiderman...underpants...wagons...popsicles...and so much more.

He reminds me to focus on the small joys of life and let my struggles and disabilities exist without being the center of my life. I survive by living in the moment and being thankful for what I have. Doing this has also made me a successful Ph.D. student. I was recently recognized for my academic accomplishments.

http://bl-psy-appsrv.ads.iu.edu:8080/
If you don't see my picture click on "Dorner receives first Pari Prerana award"

The picture is with the Dean of the University Graduate School, Dean James Wimbush

For those of you living with dystonia, gastroparesis, fibromyalgia or other chronic illness. Hang in there...live in the moment...find the small joys in your life and know that you are not alone.

Wonderful Wheels

I have been using a wheelchair for over 10 years now. When I bought my first chair I thought that I would recover from my drug-induced brain injury and someday not need it. I hoped that I could recover my ability to walk and no longer use my wheels. Today, although I have recovered my ability to walk, my wheels are still here and my perspective on using them has changed dramatically. When I do walk, I deal with increasing spasms in my back and legs. If I walk a lot I get pain, often shooting down my leg, along my torso and up into my neck. So, I use my wheels. They have become essential for me to be a productive contributor to society and a successful graduate student. Many think of the wheelchair or other assistive devices as something to dread having the need to use. As if by using wheels you are admitting defeat to your disability. I disagree. My wheels enable me to live freely and cope with dystonia effectively. When I am using my chair I feel comfortable and free from the severe spasms in my hips, legs and back. I am better able to listen to others and do my work as I am not constantly in pain or being distracted by the spasms. Wheels are freedom to live. I think that most others who use wheelchairs will agree. It is not about whether or not I can walk. It is about how best to alleviate dystonia, pain and disability in order to be a successful human being.

I must also comment that using my chair provides a feeling of smooth, gliding movement. Dystonia does not. So, using my chair sometimes gives me a feeling of what it might be like to someday be free...to move freely and smoothly as I did before dystonia entered my life. Cheers to my wonderful wheels.