I was talking on the phone with my mother. Sometimes...that in itself is the mistake.

I am helping her with her new business, particularly with art and web design questions, serving as the go-between for her vendors. It is one way that I can do something that is not a disappointment to her. I know, that is probably the second mistake...even trying.

She casually mentioned that her trainer's partner has MS. She commented on the sacrifice her trainer was making to live and support his partner. She told the trainer that she had a daughter with MS, who didn't seem to have trouble with the disease and didn't seem to have any typical symptoms.

My greatest wish is that my family would support me with the struggles I face...multiple sclerosis, asthma, arthritis. To my mother, it is as nothing. MS isn't a problem for me. That is her message to others.

I wanted to cut her off and scream how could she say that. But what is the point? She doesn't get it. She isn't interested.

11 years, 1 month, 5 days.

I have written often of late how very frightened I am at how much cognitive dysfunction I am facing. I get confused. I have to puzzle out that which I never gave a second thought. Cognitively, I have changed so fundamentally that I find myself grieving for the loss of who I was...and I struggle to accept who I am now.

The inexorable pull on my entire life MS wields has marked each day of those 11 years, 1 month, and 5 days.

That man has chronic progressive MS. I have relapsing remitting. Nearly all people with relapsing remitting MS transition to chronic progressive. But a fraction will escape that horrible decline, a loss of every part of your life until nothing is left. I work to imagine a future where I still live with good days and bad days, where hope resides. I work. That in itself is an accomplishment that no one seems to appreciate. I am not wheelchair bound. I can dress myself and prepare my own meals. I can drive my own errands and go on this vacation. I am not trapped in a shell betrayed by devastating neurological breakdown...yet.

You know, though, the phrase "good days and bad days" is a misnomer. I have not had a truly good day since I started chasing those first symptoms. I have been tired over a decade. I have hurt over a decade. I have watched my mind decline over a decade. I have had to set aside my fear for over a decade.

But...according to my family...MS doesn't affect me. I am just fine.