Turtle Journal 21

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"The Turtle Journal"

March, 2003, Volume 21

Welcome in the Spring

Spring
by Robert McCracken

Today is the day when bold kites fly,
When cumulus clouds roar across the sky.
When robins return, when children cheer,
When light rain beckons spring to appear.

Today is the day when daffodils bloom,
Which children pick to fill the room,
Today is the day when grasses green,
When leaves burst forth for spring to be seen.

May Peace be at hand soon.


Quotes of the Week:

From the first chapter of a book called The Power of Now -A Guide to
Spiritual Enlightenment by Eckhart Tolle, given to me by my
colleague and friend Dorothy at the Waldorf School:


You Are Not Your Mind

A beggar had been sitting by the side of the road for over thirty years.
One day a stranger walked by. "Spare some change?" mumbled the beggar, mechanically holding out his old baseball cap. "I have nothing to give you," said the stranger. Then he asked: "What's that you are sitting on?"  "Nothing," replied the beggar. "Just an old box. I have been sitting on it for as long as I can remember." "Ever looked inside?" asked the stranger. "No," said the beggar. "What's the point? There's nothing in there." "Have a look inside," insisted the stranger. The beggar managed to pry open the lid.  With astonishment, disbelief, and elation, he saw that the box was filled with gold.

&

by Rudolph Steiner:

"Many people ask what they should do. It is so obvious what one
should do! One should open one's eyes, one’s spiritual eyes,
to be sure! Once we open our eyes, our will follows.
Our will depends upon our life situation."

- from a lecture on the influence of St. Michael
given in Munich February 17, 1918

 

Circle of Support Meeting Update:

We recently had the first Circle of Support Meeting in months (since before the Benefit Concert in November –not including Bob’s 45th B-day party!). The notes from this meeting will serve as this issue’s update…Thank you to Sue & Ginny for writing & editing these notes. There is a lot here!

Meeting of the Circle of Support for Bob & Ginny
Saturday, March 1, 2003 – 3:00 to 4:45 at Bob & Gin’



Participants: Bob, Ginny, Sue Coakley, David Eggleton, Jan Zemba, Dan Gadish, Shai Nathanson, Janet Cromer, John Burkhardt, Margaret Ris

Not Able to Attend: Betsy Peck, Karen Weiland, Sally Eagan, Pat Ryan, Sarah Joslin, David Bird

Ginny and Bob send thanks and gratitude for all
that continues to be done on their behalf.  

They introduced the meeting by reporting a deep sense of loss related to the any profound changes Bob is experiencing with his health. This includes having Greater difficulty traveling any distance. Staying at home is now simply easier. They expressed the wish to have the continued support of friends and extended members of the Circle of Support to be "with them" during these changes. Janet Cromer noted that this is the time when they will need more support, not less, as ALS, is not "something one gets used to and adapts to", but is a constant series of profound changes, losses and adaptations. And it can be hard for those not close to Bob to recognize and respond to this. Support can take the form of initiating phone calls and visits rather than expecting Bob and Ginny to return or respond to calls in the "usual" way. This is a time of gathering in versus extending out.
  1. Update on Bob’s Health, Capacities and Needs
    1. Decline in Lung Capacity: Bob’s lung capacity recently declined significantly from 65%-31% He is now using a breathing apparatus – a BIPAP machine – to assist his breathing for periods of time during the day. It increases the amount of air he is getting and assists in exercising and more fully inflating his lungs. He is still learning how to use it, but it does provide relief. The goal is to be able to use this BIPAP machine during the night so that it gives Bob a more restful and rejuvenating night’s sleep. This change in breathing is a very significant development and Bob and Ginny are still adjusting to Bob’s decreased capacity to do things.
    2. Hoyer Lift: Bob is also finding it very difficult to transfer using the sliding board from one chair to another. His upper body and arms are weaker. To accommodate this, Bob is now using a Hoyer lift for transfers. It is a big hydraulic lift that uses a sling placed behind bob’s back and under his legs, then hoists him in the air with minimal effort on the part of the caregiver. Bob says it is the closest he’s ever felt to being a high-flying trapeze artist (with the greatest of ease!).
      3.
    3. Wheelchair Upgrade: Bob’s wheelchair has been fitted with new leg supports that allow him to recline more fully in his wheelchair – a good development since getting into and out of the recliner is more difficult. He hopes to have a further adjustment to his chair that will allow him to lie flatter in his chair.
    4. Communication Limitations: It is increasingly difficult, nearly impossible, for Bob to use the keyboard on his computer. Currently, the phone is his primary way of communicating with people. Unfortunately, the voice activated software package installed on his computer, Dragon, is not working properly due to a compatibility issue between the software and the hardware. Although the software recommended the computer hardware and use of Windows XP in his current computer set-up, so far, knowledgeable people have been unable to identify or correct the problem. As a result, Bob can only write or reply to e-mails, with assistance. Fortunately, a friend has offered to provide Bob a hand-held recorder that will allow him to begin dictating what he would otherwise write.
    5. Health Treatments:
      1. Energy Work: Bob continues to work with two energy/massage therapists, AlLandra & Rick Frank for healing, weekly. The treatments continue to yield positive results for Bob.
      2. Need for Assistance - Acupuncture and Homeopathy: Bob would like to add gentle acupuncture or acupressure and homeopathy to his treatments to help alleviate the naturopathic pain, and needs help to find a practitioner in the JP area, knowledgeable of palliative care, that would be willing to make home visits to Bob. Janet offered to contact her acupuncture practitioner in JP who is knowledgeable of and works with specific medical issues. If this practitioner cannot assist, Janet will ask for a referral.

      Needs for Visits and Companionship: As the disease progresses, Bob’s need for visits from friends is increasingly important. Bob’s increased weakness, compounded by the ice and snow on the roads and walkways, makes it difficult for him to get out of the house to appointments or to work at the Waldorf School where the buildings are mostly inaccessible by wheelchair. Also, with much of his health care needs now covered by Personal Care Attendants (PCA’s), Bob sees less of his friends who used to come to help. So – Bob strongly encourages more visits from friends - to be with him for companion-ship, to enjoy with Bob what he loves (music, poetry, writing), to read to him (holding a book and focusing to read has become more difficult), to help him with his correspondence, to help him record his poetry. Bob invites calls for visits. He cannot always accept offers, but hopes that people will initiate calls in any case and keep trying.

      Regular Visitors      : Dan Gadish sees Bob on Thursdays. John Burkhardt and Janet Cromer make visits regularly when their schedules permit. Colin Eggleton sees Bob on Mondays. Karen Weiland visits on Sunday afternoons.

    6. How Friends Can Help Bob:
      1. Transcribing: Bob needs friends to transcribe his tape recordings and work with him to finalize rough drafts after initial transcription.
      2. Solve Dragon Software Problem: Bob still hopes that the Dragon voice-activated software will be made to work on his computer. He would appreciate any assistance anyone can offer. Sue offered to ask her brother, John Coakley, a trained computer technician, for assistance or a referral.
      3. Recording Bob’s Poetry: Tommy Megan is assisting Bob to record his poetry (on CD). Bob would like to record more and would appreciate assistance to do so.
      4. Helping to Get Bob’s Poetry Published: Given the very positive response to his poetry (and TJ’s) and many requests for copies, Bob is seeking avenues to publish his poetry. He is working with Michel Spitzer of McGraw Hill publishers.
      5. Reading for Healing: Reading meditations, verse and poetry and other writings about healing bring great comfort and joy to Bob. He welcomes having friends read to him.
  2. Update on Care Providers, Health Insurance, Taxes and Legal
    3.

    Personal Care Assistants: Bob is now receiving many hours of personal care assistance each week. This could be increased as Bob needs it. While it is taking some time to find and train PCA’s that can provide the care that Bob needs, this development has provided much needed help and gives Ginny needed flexibility to get to work and take care of her own personal needs.

    1. CommonHealth Insurance:
      1. Increased Policy Cost: Bob’s personal care assistant costs and a portion of his health care treatments are covered by the CommonHealth insurance policy offered by the State. This has been a real blessing. However, because of the State’s fiscal crisis, the cost of Bob’s CommonHealth policy recently increased 
        2.

 

      1. by 55%. For the moment, the cost increase is manageable.
        2.
      2. Possible Permanent Loss of Coverage: Bob & Ginny are very concerned that Bob’s CommonHealth coverage will be permanently reduced or eliminated if and when Bob leaves his employment. Under past requirements, if Bob left his employment, the CommonHealth policy would be terminated and he would enter a "spend down" period during which he may qualify for a reinstatement of the coverage after meeting certain requirements (e.g., qualified medical costs in a short period of time represent a very significant % of their combined income). However, the State has proposed a new policy that once a policyholder leaves the coverage, they may not be reinstated. It appears that this could apply to Bob and may not be reinstated after the current requirement for the spend-down period, but they hope this will not be the case.
      3. Meeting with Attorneys in April: Bob & Ginny will meet in earlier April address health / insurance issues and to seek answers to questions about their insurance and how any changes would apply to Bob and Ginny under new rules. The meeting will be the first step to clarify the issues and what next steps to take.
      4. Support Team Assistance: Bob & Ginny may want to have a support team member attend the meeting to take notes, record the conversation if possible, and serve as a witness to these discussions just because there may be quite a lot of information. They will ask for the help if they want it.

        5.
  1. Ginny's Update

    Ginny is grateful for the time and space that Bob’s personal care assistants offer her to take care of her needs including taking walks, getting massages and keeping her own doctor appointments. Ginny identified several needs for this spring including:
    1. Spending time with friends (very important!)
    2. Taking regular respites to refresh and re-energize.
    3. Taking courses to receive continuing education credits that she needs to keep her professional certification/license.
    4. Having help to host visitors who come from afar to see Bob & Ginny. Ginny welcomes the visitors, but the apartment is getting too crowded with equipment and assistants to comfortably have friends and family stay over night.

     

  2. Respite Care: Ginny is planning regular times away to rest and recharge. She also would like to make day-trips to Connecticut to visit her Dad, brother and sister. During these times away, it is very helpful to have friends stay with Bob to provide companionship. If Ginny is away for one or several days, Bob would like to stay at home and invite/arrange for friends or relatives to stay with him at those times (in addition to the PCA’s already working with Bob.). When Sue and David’s house is finished in the next couple of months, Bob may be able to stay with them in Woburn.
    1. Help Needed/Offered:
      1. March 27-30 Ginny will be away at the Kripalu Center in Lenox, MA. Bob would like to have someone stay with him during that weekend. [David and Sarah have offered to come that Saturday. –Friday & Sunday are still open…]
      2. Ginny welcomes offers and suggestions for her respites. Sue offered use of frequent flyer miles so that Ginny can visit friends and family, or attend a retreat further away.
      3. Bob & Ginny plan to vacation for a week in mid-May or early June in Southeastern Mass or Rhode Island, if possible. Through a grant from the ALS Association, they can have personal care assistance with them during a vacation. In addition, they may wish to have friends stay close-by or with them to enjoy the time together and offer additional assistance.
  3. Meals
    1. Bob & Ginny would like to continue their current schedule of meals provided each week. The current schedule includes:
      2.

      Tuesday & Friday: Dinners are dropped off at the Waldorf School for delivery to Bob.

      Wednesday: Janet Cromer provides dinner for Bob & Ginny.

      b. Sue will communicate with Betsy Peck the need to keep the meals coming from the school community.

      c. In the event that Bob does not go to school Colin and David Eggleton have offered to deliver food to Bob and Ginny. Also, Ronnie Harris, a co- worker of Ginny’s has offered to deliver food Fridays to Ginny’s work, if someone can get the food to her home in Lexington by Thursday night.

  4. 6.  Spring Events:
    1.  Poetry Reading: Beth Cohen and Bob have been discussing plans for another poetry reading accompanied by music. They would prefer to do this in a home setting if possible. Sue & David offered the use of their house when it is finished this spring. The event (in May) could serve as a house warming.
    2. Other offers to host a music accompanied poetry reading would be welcome, too.
      3.
    3. April 27: Benefit for the Gordon Heald Fun in Falmouth, MA. Bob will read some poetry and is in charge of organizing some music for the event! (for more info, contact Ron Hoffman at PO BOX 1052 Falmouth, 02574 or call: 508 563-3677)
    4. Waldorf School Bulletin Update: At Margaret’s suggestion, Bob & Ginny will prepare an update about Bob for the Waldorf School Bulletin to inform faculty, staff, parents and students about Bob’s current situation and needs for assistance (e.g., keep the meals coming, stay in touch).

Note from Bob 3/19:

Many of these things are already taking care of, such as:
the Dragon NaturallySpeaking software is now working –yeah!;
Sarah and David Bird have offered to be here for Saturday next week when
Ginny will be gone; and the notice in the Waldorf school bulletin has gone out.

One more thing that wasn't reported at this meeting is that Bob will have his Spring Orchestra Concert tonight, March 19. This will likely be Bob's last appearance/performance for the Waldorf School music program.

 

Bob’s Journal Entries: 3/4/03

The following poems or essays were written -- actually they were dictated into a portable handheld tape recorder. They are what I would call journal entries. I am using this tape recorder "to write with" because and until my Dragon Naturally-Speaking software gets fixed. It takes the help of friends to transcribe what I've dictated on to computer and then I transfer it to the Turtle Journal (*Thank you Janet & John!). This is the beginning of a new series that will continue now each of the future Turtle Journal's. Each Turtle charcoal will now also have entries from Bob's Journal. Of course they are not really just private journal entries -but it is as if I'm talking to myself and to others -- in any case they are the various thoughts that I have as I continue to go through this journey.

As you have read in the notes from our last Circle of Support meeting, I continue to get weaker and I continue to lose more physically. As this happens it is a natural process that Ginny and I have started talking more about the subject of dying. This is reflected in some of my dictations/writings. This is a tough journey, a tough road -sometimes difficult to keep the courage, the faith -- but I try and I do. I hope as you read along with me that you will keep the courage and keep the faith too. It is terribly important that I write about what I'm going through, AND that I communicate it to you all as well. Part of the communication that is so important to me is to hear back from you. I appreciate so much the messages of love and encouragement that I get from many of you.

This first section, called "Gone Are the Days", was dictated, as a poem in the middle of the night. To get the most out of it, it will be helpful if you read it thinking about the kind of altered states that one can achieve by being awake in the middle of the night and when you consider that my lung capacity is down -it is quite a bit more difficult for me to talk especially in a reclining position, so I do speak very softly. To get into the spirit of the way it was written, read very slowly with many, many pauses. (If you do it this way it should take about an hour...about half as long as it took me to dictate it…)

 

Gone Are the Days

March 4th, 2003

It’s almost 4 O’clock.
It’s 3:59 in the morning really, March 4th, Tuesday.
And gone are the days when I could pee by myself.
As a matter of fact long gone are the days when I could pee by myself
            or the days when I could get myself up at night.

Thanks to this little tape recorder that Tommy got me, now I can record my
           voice in the middle of the night when nobody is around to help me.

Long gone are the days when I could even move myself in bed,
            pull myself around.
My legs are high on pillows, I can move my head still,
I can just barely hold this tape recorder in my right hand -always afraid
            it will fall out of my hand though, so I keep it close to my chest,
            if it falls, it won’t fall too far.

My body is sort of slunked down in the bed so when I raise the head of the bed
            I feel more like an accordion, than having my head raised.
If I raise my head anymore my knees would be on my chest -that doesn’t really
            do much good; but I did pee with the help of Uche.

Now, not only do I need to have somebody get me up and assist me to the edge
            of the bed, pull my legs forward, but also I had to have his help
            lifting my legs and placing my penis in the bottle, the urinal.
I was extremely embarrassed, I felt ashamed about that.
But that’s the way it is. What else am I going to do?

My melancholic side dwells on it; I want to blame somebody or something-
            or I want pity… but not really.

What I really want is not to have to do this.
Or to be able to transform these feelings because I get too attached to the look
            of everything, the feel of everything.

Last night was difficult for me, very difficult; it was a difficult night not to have
            the attention that I really wanted. Again, is it pity, is it attention, is it
            compassion that I really want? Is it independence?
What is it?

I don’t really want pity.
I do want compassion, and I guess there is a part of me that lacks compassion,
            a part that lacks compassion for myself. Otherwise I wouldn’t have gotten
            so upset.

And it was a difficult beginning to the day yesterday when Cordelia, my home
             health aide, did not show up, called in sick,
            but didn’t let me know early enough for me to be able to get anyone else.
We managed.  Uche came.  And Minerve came early.
Uche got me up about 8:30. By 9 O’clock I was dressed, no shower.

About 2 O’clock in the afternoon when I was at AlLandra’s, I realized that
            nobody had brushed my hair.
These kinds of things I don’t think of.
I need my home health aides to help me think of them.
But I got through it.
I should say I got through it with the help of several people.

So, long, long gone are the days when I could do very much of anything by
            myself. I need help with everything. I can still talk…there is a great
            blessing in that. I don’t know how long that will last. Maybe a few
            weeks, months, or longer.
But it’s hard for me.
It’s hard for me when I get emotional and try to talk.
It’s hard for me to have an argument with Ginny…I get winded -immediately.
When I get emotionally upset I get winded,
So now I have a Bipap machine that helps me breathe, that pushes air into my
            lungs as I breathe in, and it massages or exercises my lungs in a way that
            I cannot do any longer.
So far I use it for about 20 or 30 minutes, once or twice a day.
I’m working up to the point where I could use it through the night, or at least for
            a part of the night.

Long gone are the days when I could get myself up in bed or out of bed
            watch TV… listen to music… write… read…
            play games on the computer, anything like that.
I cannot do that.
I miss the independence of being able to do that.

But here I am, now it’s 4:18 AM, and I’m talking into this tape recorder by
            myself. So I still have some independence.
            I’ll have to ask someone to transcribe this.
            There is no way I’ll be able to type it into the computer, word processor.
But with the help of someone, this can get done too.

I discovered……………..


Ironically, I’m a little clearer in the middle of the night, in bed, than during
            parts of the day when I’m on Neurontin.
I get so loopy, spacey, tired.

So yesterday, I discovered that maybe it’s better to give into the spacey, loopy,
            and tiredness feeling and take time out… rest… practice my breathing…
            listen to music… meditate… pray.

Doing all these things in a way that there’s no pressure, no work.
To take it easy, to give myself a break.
So I discovered that yesterday,
            and I’m going to try to do that more, maybe a little bit every day.

I’ve been working very hard.
Ginny’s been working very hard.
We both need a break.
As Steven Levine says, it’s so hard when the mind does not forgive, when the
            mind is hard.

It’s so hard when we are hard on ourselves. When there’s a grip on things, on
            ideas, on our ways of being…
            when the mind has a grip like steel on things -an attitude-
            on a way of being, and will not let go.

The tendency of the mind is to grip onto things,
            hold it and not let it go for fear that it will forget,
            for fear that the mind itself will be forgotten,
            for fear… etcetera, etcetera.

The mind has a tendency to fear.
We have to help the mind to be easy on itself,
            to be easy on others,
            to be easy on the body, listen to the body.

It’s a constant…
            arena of discovery to allow the body to lead,
            to watch and listen to the body…the pain, the sensations.

To allow the mind to watch and listen and feel the body.
In a way, feeling is not possible by the mind.
It is a contradiction of terms.
The body can feel, but the mind can watch, observe, witness.
It tries to understand and I’m not sure that it can.
I’m not sure that true understanding is a function of the mind.

The heart can understand.
But to get to the understanding of the heart takes great…
            delicacy, sensitivity.

Long gone are the days when I can allow myself...
            that I can allow myself -to work in the old way, to work in the old ways.
I need help from other people.
I need to take it easy.
I need to reserve and preserve my energies.
I need to be careful and compassionate towards myself.

Long gone are the days
            -that I can do things without paying attention to the energy it takes.
Long gone are the days when I can do things in total abandon,
            let myself be completely emotional, and exaggerate those emotions,
            live in those emotions to the fullest…
            because it is too exhausting.
It’s like jumping off a cliff and then remembering that I don’t have a parachute
            or a tree limb to hang onto.
The water or the earth is below without any protection.
God will protect that is true,
            but I don’t know if God protects oneself from oneself.

There’s a certain freedom that comes from being so limited -going through this
            journey- that has taken me to look within, to work on such deep levels.
And the freedom is to begin to think for myself, to be able to be true to myself,
            to be honest about everything that I think and do
            in a way that I never was before.

That’s true freedom.
It’s hard work also.
But it is beginning to get easier.

            It’s beginning to get easier to remember to be true to myself,
                    to remember what is true and what is not.
            It’s beginning to get easier to have a kind of response to adverse
                    events, situations that are out of my control, that are
                    difficult, that are painful; to have the kind of response that is
                    thoughtful and compassionate.
            It is getting easier.

It’s also getting easier to think about other people.
For a long time now I’ve been thinking about myself, it’s been
            necessary for me to think about myself, to put me first.
Not just through this illness and through this journey, but
            throughout my whole life I’ve done that.

I’ve had what many have called a difficult and extraordinary life.
Extraordinary in its difficulties, but also extraordinary in the experiences
            and in the way that I’ve experienced those experiences.
But it has also shaped me to be very selfish and to think
            about myself a lot. Sometimes a lot more than I think about others.

I’ve always had compassion for others when I’ve taken the time,
            but I’ve not always taken the time.
I’ve always had a lot of love for others, it’s been easy for me to love other
            people.
It’s not been so easy to love myself, and to accept love from others.


            And now it is getting easier to love myself and to love others.
            And I’ve had a lot of practice this year in accepting love, and help
                    from others.
            And now it is getting easier to start thinking about other people,
                    to extend my thoughts and feeling of compassion and love
            towards other people.
            And when you think about it, it is truly all one,
                    it really is.

 

You Angels, and You Guides of Mine and Holy Spirit

Okay. It’s Tuesday March fourth, 4:30 PM, about twelve hours after I recorded the first time on this tape.

Well it’s been a kind of a tough day, I’ve been depressed, didn’t get enough sleep last night, felt angry and mad and unfinished about all the stuff I felt last night – all the emotional stuff.

Right now I’m watching a movie, just turned it on, called Sidhartha.  Maybe it’ll help me change my mood, nothing else that I’ve done today has helped really, except for a brief time of meditating and listening to some music, but that was very brief. And breathing my oxygen...not oxygen but my breathing machine. It’s a very beautiful film....

Who are we? Question of this movie, question of the day, question of life.  Who are we? Who am I? A very good question to ponder. A question to ask help with. And now let me ask.

You angels, and you guides of mine and Holy Spirit,
            Please help me to know the true me,
            The love in my heart -may it expand,
            May it melt and expand.
            May I know my true self.
            May I know healing.
            May I know healing and recognize
                    that the healing of suffering is of great value.

You angels, and you guides of mine and Holy Spirit,
            May I know my true Self who can really help me,
            Who is abundant,
            Who is deserving,
            Who is love,
            Who is happy, joyful.
            Who goes through all the feelings with ease,
            Who changes with the wind and shines like the sun,
                    and leads me to safety like a candle at night.

You angels, and you guides of mine and Holy Spirit,
May I be patient and know my true self.
May I have help from all the angels, and from God, to know myself,
            to heal myself, to be comfort to myself.
May I love others,
May I love Ginny,
May I truly love others and care for others,
May I care for myself and for others.
May I find compassion for the pain and suffering,
May I allow the pain and suffering to melt...to be.
May I have compassion for the suffering,
May all people be healed of suffering.

Amen.

 

In all of my Poetry Issues and Tributes to Poetry and even in the
Poetry Corner, I've never quoted Shakespeare. How have I missed this
great God of a poet? Well, here we go, I would like to include here in
this Turtle Journal number 21, one of my favorite Sonnets -- it may
just be the first of several to appear in the Turtle Journals…


When to the Sessions of Sweet Silent Thought

            When to the sessions of sweet silent thought
            I summon up remembrance of things past,
            I sigh the lack of many a thing I sought,
            And with old woes new wail my dear time’s waste.
            Then can I drown an eye, unused to flow,
            For precious friends hid in death's dateless night,
            And weep afresh love's long since canceled woe,
            And moan th’ expense of many a vanished sight.
            Then can I grieve at grievances foregone,
            And heavily from woe to woe tell o’er
            The sad account of fore-bemoaned moan,
            Which I new pay as if not paid before.
            But if the while I think on thee, dear friend,
            All losses are restored and sorrows end.


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remember…

~LOVE & HELP IS ALL AROUND~


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