It's Not Nice Being This Disabled

Herrard from Amsterdam was diagnosed with MS about a year ago. She sent an email about a week ago and included her blog address. The one I read is in English -- not her first language, but beautifully written. I have been reading, and re-reading.

She talks about things we have all felt:

• fighting with bureaucracy, trying desperately to remain independent, or as independent as possible
• helplessness, hopelessness, fear, rage
  
• intimacy issues
• spasms
  
• going to the bathroom, showering
• getting dressed
• isolation, feeling trapped inside
• asking for help and the unfairness of NEEDING to ask for help

Many of us have lived through these daily tasks and had the same thoughts and feelings, but Herrard writes about them so we feel them again. My heart goes out to her, and I feel so close to her, she is my 'comrade-in-arms' against MS, she is me.

Read her poem, but read it aloud, quietly, slowly, thoughtfully. One commenter said he wished he could hear it in her own voice -- yes, but I thought I did. Another said it was powerful -- yes, as is the entire blog. Other MSers can relate with her daily life and with the feelings she has communicated so well. People without MS can understand.

MS Awareness

The MS Awareness Foundation has two major goals in its mission to provide a rewarding lifestyle experience for MSers.

First is educating the public, especially MSers, their family and friends. They concentrate on dispelling myths, focusing on diagnosis and treatment. They present techniques for accepting the diagnosis as well as coping techniques.

The second goal seems to be providing information on an exercise program, for sale in a video and DVD format.

The web site provides details on MS diagnosis, MS symptoms, and targeted exercises developed specifically for MSers. There are links to organizations in the US and the UK.