March 2010

Sorry we haven’t been giving frequent reports on Molly’s condition, but we’ve been vigorously pursuing various avenues, some promising but none magic bullets. In the meantime, her condition on the whole gets worse. She has to stay in a darkened room at our house because of the rawness of her senses (hyperacusis)–she is still very sensitive to light, sound, scent, motion and commotion. She remains weak and subject to physical and mental torment every day, but at least she continues to eat well. Her doctors work hard. Cousin Catherine was a big boost for everyone while she was in Santa Fe, staying at Molly’s house. Thank you, Catherine!

Molly sends vast love and hugs to everyone. She asked me to convey that one of the most challenging aspects of her illness at the moment is her inability to be in more direct and individual contact with her loved ones she misses terribly. She is unable to write or converse or even dictate except for small amounts, which even then are very taxing. If you can believe it, even the presence of others in her room triggers a great many symptoms. She felt enormously supported by Catherine’s coming out, but heart-broken not to be able to enjoy her beloved cousin’s delightful company more often.

It’s especially difficult not to be able to express in a way she would like her gratitude for the e-mails, art work, inspiring messages and book excerpts, photographs, gifts, voice mail messages, prayers, Reiki, blog entries, letters, cards and loving thoughts, and those who sit with her in meditation or prayer. It is also hard not to be able to express support during loved ones’ own difficult times and to share in celebrations of joyful times. She says, Please know that even though I am silent at the moment, I am sending love and best wishes through the ether.

As you can see, Molly’s symptoms have made her very very isolated, and I know your contact and supportive thoughts are very meaningful to her. Blog comments are fun for her too. I know she is grateful for your concern, as are Frank and I.

Love,
Marilyn, Molly and Frank

P.S. Molly asks me to add our gratitude for research, expertise, practical support and other contributions she can't even begin to list!