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Living with ALS: The Women's Voice

Origins
Reflections by Mary McConaghy

After I was diagnosed with ALS, I read many wonderful books by people living with ALS, I learned a lot and found some comfort, but I also has a feeling there was something missing from these first-person accounts. 

Finally, it hit me that most of these inspiring books written by ALS patients have been written by men.  And admirable as men may be, their focus is not always on the same concerns that are central for many women  -  in particular, I was thinking about how much more seriously ill women talk about  and devote their energy to their families and friends.

Networks of caring relationships have particular significance for women; many women gain strength from such relationships and they also have a deep commitment to caring for those they love.   Not surprisingly, I have been discovering that women with ALS place great value on the relationships which sustain them and have a deep commitment to doing all they can to leave their loved ones in a good place when they die.

I was not comfortable writing a book about my ALS experiences and concern.  Instead, when the idea of a web site soon emerged as an opportunity for women with ALS to face their diagnoses not alone, but together in relationship. A web site run by women for women can serve as a way for women with ALS to connect and to share their perspectives on issues of importance to us all.  Here women can both get and  give strength, support each other, share their experiences,  and enrich each other’s lives.  The web allows women, no matter how far apart or isolated they are, to share their experiences, their laughter and their sorrows, their concerns for their loved ones and for each other.

These thoughts led me to revisit a vision of an eternal hug that I have carried with me for a long time.   It is a powerful image of an anonymous cave woman embracing a child, and of all the caring and love and life in that hug being passed on through the centuries. As recipients of that hug and all its meaning, we now share this gift with each other and pass it on to those we love. Eternity is in this hug.

 The spirit of that long ago cavewoman’s hug can have special significance for women with ALS and can power this web site. This is a place where women with ALS can help and care for each other as they share their wisdom and listen to each other's concerns - particularly concerns relating to human connections, nurturing and family that are often a central focus for women. ALS is a devastating and challenging diagnosis, but this web site can provide a place for us to find strength, to live more fully, to connect with each other and to support each other and our loved ones as we travel this difficult journey.

-Mary McConaghy