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.

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.