The first is from a woman whose husband and son died the same week.

Amen. I cannot tell you how inspiring that message is –and how difficult it is to remember it in the
midst of change and challenge.

This next message is to caregivers from a caregiver, found on the ALS Digest. It describes very
well some of the constant challenges and mixed emotions that caregivers must face.

My Dear Friends and Family,

I have kept in touch with some of you but not all and it has been several weeks now since the Turtle Journal has made an appearance. The Turtle may have been hibernating, quiet and still in its shell, but we have been as busy as honey bees lately.

As most of you know we moved –with many people’s help! On June first and second we had what seemed like a gentle and loving army of folks pack us up, clean the old house and the new house and move us six blocks south, up the street. In the ensuing two weeks we had more help putting up paintings, moving furniture and bookcases and making us feel like this can be our new home. This last weekend we got a break from it all and went with Sue and David to Rockport on the North Shore of Mass. We attended a great chamber music concert of Richard Stolzman and his family. The whole weekend was healing, relaxing and refreshing. Something Gin and I have needed for a long while. Tonight we have another of our organizational meetings for the Circle of Support group and tomorrow evening we will have the Resounding Joy Singers and friends come sing and "warm-up" our house for us.

I would like to give a picture of some of the symptoms and progression of this illness that have been happening over the last few weeks and months.

Back in March and April I was still teaching music full time and starting to feel the exhaustion of trying to keep up as I hobbled around on crutches, sometimes using my walker. My main occupations regarding my healthcare were: trying to get more info from Doc Brown; keeping up with medical tests (some of which were very invasive and more often than not, proving not to be of help); navigating the massive medical system (and trying to "teach" my docs about "patient-bedside manners" and how to treat me as a real person, not just a test or research subject –unfortunately, this has mostly been a lost cause!); going for physical therapy/Feldenkrais; and receiving bee venom injections and homeopathic injections (with Jan’s help). Of course I continued to sing through it all in our Resounding Joy group (one of the best therapies around!)

As we moved into May moving became a key word! Moving to a new place to live and moving me. The latter became more difficult, especially negotiating stairs. By the time May 31 came along, the day before our move to the new apartment, I could not get up those stairs at 192 Chestnut anymore. Gin and Anne Spitzer, our dear neighbor and friend, (two strong women!) carried me up those stairs more than once. I am very glad to say I never fell on, down or up those stairs, (this was a great concern each time I was on them). I was walking to and from places with the help of my crutches –mostly to the car and various buildings, places. Once in a while I tried walking around part of the pond with Ginny, and realized that I could not do that anymore. I was feeling really good about my Feldenkrais/PT work then as well. It helped me to "stay loose" –as the stiffening of muscles has been a big part of my difficulty in moving.

The apartment is lovely, with open rooms, light streaming in through the huge eleven- foot windows, and our paintings and furniture is set up to make it feel more like home. Yet we have some handicapped adaptations that are not quite up to the level of my needs. This is another effort to deal with, as we have to go through many steps of bureaucracy to get the work done. Nothing is for sure -just as with the insurance companies. They have recently told us that the Home Care services that I am receiving may not be continued in the future. And they are quite vague about when "the future" is going to happen. I have just started receiving these services over the last three weeks –something that I truly need in order to get showered, dressed and to have someone move my legs and help me with the little bit of exercising that I can still do. (A physical therapist comes twice a week, an occupational therapist once and a home health aid comes every week day. Soon I will need a nurse to check on various functions that may start deteriorating "in the future".) So this new news from the insurance company is quite alarming to us and creates yet another urgent challenge for Gin and me to solve.

Fortunately we have an abundance of friends who offer their services and help to keep us going. With each obstacle we encounter, a little (and sometimes big) miracle comes our way to help us through it. We must remember this outpouring of love and support and real help to bolster our faith that we can get through it all. But the "all’ is a lot. For we keep finding that new obstacles are at every corner.

As it turns out I haven’t told you as much about my condition as I had planned. Other things keep coming to mind…but I can tell you that it is almost impossible for me to stand without a huge effort. I push myself up with the help of my walker or a grab bar or someone grabbing my belt. I am not strong enough in my legs to support myself standing, so my arm muscles are getting pretty strong. But with this illness that will change –who knows when. If it is sooner than later, (which has been the tendency lately) it will be another huge hurdle for me. For then I will be completely dependent on being lifted by others to do simple transfers.

That is why the messages at the beginning of this TJ are so important to me. Ginny’s message that follows is also important and inspiring.

Keep the prayers and love flowing our way as we send you all love and thanks from deep in our hearts!! Thanks!

The image drifts into mind while walking around Jamaica Pond. The fisherman casts out and waits. Time is always a part of casting in. Time and knowing what to do just at the right moment.

Still walking the pond, another image comes to mind as I see three people in wheelchairs pass me by. None of them Bob. One of them elderly, the other two are young people in their twenties. I see them now. I feel for them and wonder what their circumstances are and what caused them to be unable to walk. All of them are being pushed by someone else. I wonder about them, too.

In the past, as they passed me by, I didn’t stop and take time and wonder what they were going through. Cast out of my awareness for many reasons that I’ll come back to as I discover and write more in this series. Already a deep sadness and pain wells up in my heart. And with that moment, some humanity is shared and cast back in again.

So I send out, cast out the line to you all….with thanks for all the amazing gifts you’ve sent our way.

Burning sage
Red eyes and tomatoes
Big juicy feathers and pillows

Never mind the stains on our eyes

If it were up to me and the world beyond sight –or what really is not in the mind, but in
the heart, then I would say that all could be possible. But truly, that is only reality of
the unknown.

Apricots please the smell of ice cream
Chocolate cake and apple pie do not soothe as the silence of the soul soothes

Mozart had it right, but how he suffered. Did he know his suffering? Or did he only
know his music? Beethoven knew both. The ecstasy of music. Can it take you far
enough into heaven or is it an escape?

The real choice is always somewhere, but where?
God died yesterday and will rise tomorrow. Alleluia! Amen.

If I died tomorrow, how sad it would be, but how glorious it would be to honor God,
that I would join him on His day! (Of course everyday is His.)

Saturday, March 30, 2002