A friend of mine has recently learned that her very good, long-time friend has ALS. A mutual friend sent her the following email as a way to comfort her. She wants to remain anonymous, but here are her words. I thought they were inspiring for us all.
I guess I never told you about the most influential person in my life that taught me the true lesson of "living" and "dying". I was in S. California in 1973, totally distraught because I had not found "Place" as I had intuited it. So I ended up substitute teaching, bidding my time til I could get the hell out of there. I didn't really want to be a classroon teacher again and DEFINITELY NOT in S. California where my whole professional life had begun. So my second assignment was in a 4th-5th combo class of a teacher who was mysteriously ill (she had
literally fallen off her chair one day while reading to the kids). She was one of those exceptinally gifted teachers and her kids loved her; what an act to try to sub for! But I thought it would just be a week or so...(this was early January.)
In those days ALS was still not an easy diagnosis at all; so her tests went on and on...and I remained subbing...her kids missed her a lot. One day she came to me after school and told me that she had been diagnosed with ALS...and what that meant. Only I and her family knew at this point. She would
not be returning to the classroom... We discussed how to communicate this to the students. By this time Nancy was already using a cane. Anyway, we decided that she would come to the classroom, we'd have our circle, and she would share her diagnosis and it's prognosis with them. The kids were great. This became a lesson on illness, supportive love, living, compassion, talking about death and dying.
Of course we kept in contact with Nancy via letters, student made cards, etc. I took a field trip or two to nursing homes and had the kids interact with the residents. I can't recall for sure, but I think Nancy may have come back to visit at least once. Nancy's family treated her very realistically... such as wheeling her into baseball games and her teen age son's school activities, to the Hollywood Bowl and concerts in the Los Angeles Chandler Pavilion, etc etc. They gave her a life...
Nancy was interested in journaling the progress of her illness...She lost her ability to write after awhile so her husband, an engineer type, created a photovoltaic cell on a headband..for after awhile the only part of her body she could control were the muscles on her forehead and a little neck movement..She would focus the light of the cell on the keys of the typewriter her husband had rigged up on a over-the-bed stand in front of her and she typed her messages, her journal, recipes for ALS patients, etc.
I would send Nancy audio tapes from Eureka, often made at the coast with the waves thundering, or here at the waterfalls; she would send me her "shorthand" replies... When I had my housefire I wept at the loss of Nancy's letters! I think Nancy lived about 5 years after her diagnosis. Yes, her five surviving years were years of total dependency, but she kept giving, kept teaching, kept inspiring her family and friends. She wanted to give vital information to the ALS community of other patients and the medical field which was doing research and providing treatment.
I am sure much has changed since 1974. I now have another dear woman diagnosed with ALS... She and her husband were the parents of some of my La Puente students that I have known since 1968. She was just diagnosed in 2004...she is probably about 60. I last saw her last year... She had lost the use of her hands and arms, but still had great spirits; she had to be fed by her husband, bathed, dressed, etc etc. It is really hard on her husband who is now about my age, over 65. The constant caregiving takes a real toll and the caregiver needs respite. The limbs go and leaves one so helpless.
There are terrific ALS groups... support groups for caregivers; support groups for patients; lots of ALS services for theraputic aids, newsletters, etc. Much has improved since Nancy's funky communication device in '74. I can truly say that Nancy's modeling of what LIFE is all about...what one can offer as a living human being, though totally dependent and seemingly uncommunicative, has been an enduring and lasting inspiration. She remains the most inspiring person who has touched my life. I check myself when I whine or snivel or wish for...... Unfortunately I have no patience at all for complainers. Her approach to her dying was one of dignity, even patience and resourcefulness.
She truly lived every day, breath and moment fully.
We all are terminal. How to we approach each day...? Living fully and ready to gracefully let go if death were granted immenently? in a week, a month, a year?
Read the book Tuesdays with Morrie. I understand there is also a movie.
Annie is ready to give you many gifts...lessons of living and dying.
Cherish those lessons. Celebrate the gift of your friendship and what you can continue to offer her in love, stories, visits, laughter etc.
Don't diminish her life with pity or panic or fear. Share all the things you have enjoyed with her and acknowlege what you are still learning from her and enjoying with her. They are just different, perhaps. And take the ultimate lessons from her... what it is to live fully and not fear death.