Never Give Up! Never Give In!
Last updated: December 2014
So, what does a quote from one of my favorite movies (Galaxy Quest) have to do with MS?
I spent 20 years working and participating in two regional science fiction conventions - Minicon and CONvergence, until my PPMS made it impossible for me to do so.
Science fiction is my favorite genre of literature and Louis L'Amour is my favorite author. They both embody surviving against the odds, self-discovery and making the world a better place.
Again, what does this have to do with MS?
I am a survivor. Even though MS is attacking, and killing, my spinal cord and my brain, I am surviving. Admittedly some days better than others, but I am surviving.
Each day I learn, or re-learn something about myself. Some of it good, some of it not so good.
Even with the MS, each day I try to make the world a better place. This could be something as simple as enjoying a patch of sunshine from my wheelchair, or participating in a study that includes PPMSers.
The MS has taken my ability to walk, stand, use a toilet, dress myself, transfer from my bed to my wheelchair and prepare my own meals (I love to cook) but it hasn't taken my will, my desires, my loves, though it nearly took one of them, my husband.
The stress of the MS and being my sole caregiver allowed cancer to manifest in him. He was given less than seven weeks to live without treatment.
We went through treatment for him and he is now cancer free. He is a cancer survivor. We are cancer survivors.
I will survive the MS, even as it kills me. I will beat it.
By participating in studies and trials. By never giving up. By making the world a better place by adding to the knowledge of MS, even in a small way.
This is how I survived two neurologists--one who wouldn't look and one who wouldn't test (I found out about her MS suspicions after I badgered my primary care doctor into a referral to Mayo Clinics when my condition continued to deteriorate. I had to carry the hard copy of the neurologists' notes to Mayo-I read her notes). She never did tell me. Mayo made the diagnosis.
My battles are with doctors, insurance companies, Social Security, Medicare and my own body instead of against savages, aliens or the elements; but they are battles and I am fighting for my life.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: