When I offered to write about Multiple Sclerosis for the Diversity Committee back at our community weekend, I never knew how difficult a task it would turn out to be. My emotions were suddenly fired up again with the very fact that I have this disease. Actually I find it easier to climb stairs than write words about this disease. And even easier to just show people how I live with it. For those of you who do not know about MS as it is commonly referred, it is a chronic inflammatory disease that affects the central nervous system. MS can cause a variety of symptoms including changes in sensation, vision, muscle weakness, difficulty with coordination and speech, severe fatigue and pain. For the purpose of this article I’ll skip the medical details but am happy to offer more information if you wish to contact me.

I was diagnosed in 1979 as a senior in college ready to run, travel and offer all I could in the world. Well I never did get to the running part. I have no regrets. I am living a vibrant and full life. I learned early on that MS has a mind all its own. I often made plans that I could not keep or at the very least had to alter in some way. With a mix of emotions but a strong desire to be part of the world I learned to be flexible and live in the moment. I have actually found that this mind set, although originally forced upon me, has actually been a blessing. I truly appreciate the little things in life and I do not take anything for granted.

I don’t really remember what it was like not to be faced with some physical challenge. I have needed wheelchairs, walkers, scooters and canes and even Depends at various times depending on my symptoms and the activity. I have fallen and bruised not only my body but my pride. Still, I feel like I live a pretty normal for lack of a better word, kind of life. There are even days I forget I am afflicted with this disease. But I have to admit that there are those occasional days I throw myself a little pity party.

I entered the Woman Within East Coast Sage Circle (ECSC) family three years ago in Massachusetts. I was in the midst of an exacerbation (flareup) and was not sure I could physically handle a weekend full of unknowns. The weekend did present me with many challenges. But there were women there to support me. I remember feeling unable to celebrate my joy by drumming in the center of the women on a beautiful day outdoors. I was not feeling stable enough to approach the “Mother” drum. Without a word, but with just a knowing, a staff member handed me a drum stick and gently guided me to the center of the women celebrating life. Wow, what a feeling!

At different events in the community women have expressed their concern that their offers to assist me might be rescuing and offend me. I have only been lovingly supported. I appreciate the offers and when I feel it is needed I willingly accept. When I do not need help, I am clear about it and feel absolutely heard.

As far I can tell it does not matter to any of the women in the community that I prefer sitting to standing or that it takes extra time to for me to get from here to there or that it can be easier for me to roll my way to the center of the circle rather than walk. I may not be involved in everything on a Training Weekend for safety sake, but never because someone treated me as weak or less than. I can, at times cast doubt about myself. As positive as I am I still need to quiet my inner critic! If you have staffed, then you know how much goes into planning and carrying out the weekend. I know that my needs have caused slight shifts in the way things are done, but the staff members do so with incredible sensitivity. I do at times, for different reasons or perhaps for no reason at all, feel sad or angry that I can’t be part of something because my body just won’t allow it. However, what my experience with Woman Within has given me is the knowledge that it is okay to have all of my feelings.

ECSC offers me a way to help make a difference for others without feeling different from anyone else. I have been given a gift and even if I trip, stumble or fall I have learned that I am graceful.

Thanks to each of you for enriching my life and giving me the chance to enrich yours.


Marcy Lomen
(WWTW Sept. 2003, Camp Winadoo, Pittsfield, MA )
notables@comcast.net
978-697-9411