Good morning. Today is Wednesday, March 26, 6:00 a.m. Sitting up in bed. I have the breathing machine mask over my head. I took the nose mask off my nose, and I hope that when I need to, I can put it back on myself. I keep it over my head because it’s harder and harder now for me to put anything on top of my head. I can’t put a hat on, and the earphones I use with the telephone or the stereo, I cannot put that on anymore by myself. My left arm is too weak. My right arm is starting to be weak so that I cannot really lift my hands over my head.

I am feeling pretty weak this morning. I used the BIPAP machine for about 4 hours in the night and then took it off. I took it off at 4 a.m. and I’m not sure why except that I think maybe I couldn’t breathe well enough, so it woke me up because I do have some kind of a stuffy nose or a cold so it’s really hard to breathe with it on.

I’ve been thinking about the poems that I’ve written or recorded, some of them with Tommy, but especially the last few days, the ones that I have written – or maybe not poems but the dictations I have made on this machine- I guess I’ll call them Journal Entries - and I’ve started to become a little self-conscious sometimes about how much I talk about myself, but I will continue.

I’m taking more Neurontin and another drug called Elavil to help with the pain because the pain has increased over the last two weeks so now I’m on such a high dose of Neurontin around-the-clock that I’m tired most of the time when I’m awake I feel loopy and have trouble concentrating, and that is the case right now too.

I wanted to say that I am so grateful, I am so grateful for the things that I do have, after talking so much about the things that I don’t have, the things I have lost, the things I wish I could do, The Things I Miss... I am grateful for so many people, for all the help that I get, what I have gained...

I have gained a lot of time, much more time to do things because everything takes so long. And poor Ginny has lost time. While I’ve gained it, she has lost it because she has so much more to do, not just her work, working two or three jobs to make ends meet, but also just taking care of me when other help is not here, and sometimes when other help is here, and making herself feel comfortable and safe in her own house when we have a third person, sometimes a third and fourth person, here almost all the time. It is a stress not to be able to have time alone together, Ginny and me. We have been working on it, trying to work with it, and it is still difficult.

It really is an amazing thing to have so many people helping with one’s care, with one’s health. I saw two doctors and a social worker last week – or it’s almost two weeks now – and I continue to talk to both of those doctors. One is the doctor whom I refer to as my ALS doctor. The other is the doctor who works in the Palliative Care Unit at Mass. General and specializes in helping people with pain, chronic pain, issues, and I talked to her yesterday. She is helping me with medication and other suggestions about positioning my body, my legs, that night because now I have a lot of pain almost constantly in my buttocks because I have no more muscle or extra fat there – I have plenty in my stomach, everything seems to go to my fat stomach. Anyway, it is funny to have so many people helping me. I have all these different nursing aides, I have a physical therapist, and I will have a speech therapist soon.

I also go to the Marino Center where I have another doctor who works with alternative and holistic care. I get supplements, I get vitamins, and I will be going to an acupuncturist as well. And then I have my energy workers who, quite frankly, seem to be helping me the most – I have three now, I added another last week. A friend of Rick Frank's came by and did some Reiki treatment with me, and it was very strong - actually Rick was there too – so the three of us felt the energy going quite strongly throughout the session in the whole room, the whole apartment. The two of them come to me. Rick gives me a massage and cranial-sacral work and lymph drainage and general energy work. And then I have a nurse who comes once a week or once every other week to check in on me.

And I have the people who help me with my wheelchair, the Clinic, the company that provides service, provides repairs, new equipment. I have an excellent case manager at Harvard Pilgrim, my insurance company, and when I have trouble or need more time with this or that person, she really "goes to bat" for me, as they say – she is excellent. And I know I’m leaving out some people. But that’s a glimpse of how many people are involved in my health care, and that does not include all the friends and volunteers who make food for us, who come to visit, who generally support us with their prayers and thoughts and acts of kindness, some of which we don’t even see, and many of whom we don’t have time or energy to thank personally.

And then, of course, there is the whole other area of finances. This disease, this illness, costs hundreds of thousands of dollars per year to keep a body - to keep a person - going, to provide the care that is needed. Much of that is paid by insurance, and much of it isn’t. And so, we have had fundraisers, and we have had many, many, many people give me a lot of money from $10 or $20 to quite a bit more, and that is incredibly helpful, and Ginny and I are very, very grateful for that.

There are also the people on the Internet (or I guess there are people at the end of the electronic transmitting technology…). To begin with, there is Charlie -- who I call my computer friend, or "Computer Charlie" -- of course he is much more than that. He has helped me so many times with the various problems I have using my computer -- that are probably fairly simple, but for my simple mindedness when it comes to computers, I am easily overwhelmed. I have two people who helped me with my voice activation "the Dragon" software, both my cousin and another assistive technology specialist. They will also help me with more technology which will help me communicate when I can no longer use my voice. Anyway, that’s not what I meant to get at… I also have those people who play chess with me on Yahoo.com games and chess website. And they don’t even know me, but they do help me because one of the things I can do fairly easily, with a click of the mouse, is to play chess. Anything that requires just one click is pretty easy for me to do. Anything that requires me to use both hands, like typing or basically anything else, is much more difficult and takes a lot of time and energy.

I am grateful. I am grateful for the spiritual world, the spiritual beings, the angels and the hierarchies that I cannot see and cannot hear, that I do not really know, but I feel them, I sense them helping me, supporting me. The other day I had a meditation/prayer that was so intense, and I knew that my angels, many angels, were surrounding me with light. Ginny was also surrounding me, both in the spiritual form and physically. She was there for me. I seemed to be going through what they call in Siddha Yoga, "kriyas", or experiences of deep emotional or spiritual releasing --possibly of past lives or I don’t know what they were, but all kinds of intense releases of energy, of horrible-fiery experiences and emotions and sensations held tightly to --of the past. They were so intense and I know that it was a releasing of a sort because I could feel it – I could feel it physically. I could feel it in my body shaking, my legs and feet trembling and feeling raw or numb, of tingling and sometimes sharp energy running up-and-down me, through my tears and my voice trying to scream, which I cannot do, but it was sort of a silent scream -like the painting that is so popular now by the German expressionist, I can’t remember his name… Anyway, that was intense - and it made me realize that the spiritual experience, when we tap into the world beyond our physical senses and live in the world of the spirit – I don’t know what to call it besides that, maybe other people use other words, but I call it the spiritual experience - it is so much more profound because it supports us, we could not have a physical body without it. It is deeper and even more painful, or more joyful -the experiences are far greater- than what I experience physically. The pain and suffering that I experienced in those 20 minutes that I witnessed, that I went along with, was like peeling an onion, like layers and layers and layers of more experience, more pain, more suffering - peeling them right away, right off - and it made me know and realize that the physical body, the physical pain, the physical discomfort, the lack of movement, the paralysis that I have is nothing compared to the experience of the spirit. The spirit is whole, it is full. I don’t have the words to describe it. It’s intense, it’s huge, it’s filled with light, and it’s filled with darkness that the light is fighting to overcome.

Oh, Michael, great archangel Michael, I know your
        presence is here.
Thank you, I thank you.

Oh, St. Francis, great and humble and loving and
        compassionate St. Francis,
I thank you for your presence.

And for all of the other angels, for Whose names
        I don’t know, many of whom maybe I don’t
        even know are there,
I thank you.

And for each angel, there is a human being who helps
        me, and for each human being who helps me,
        there is an angel, or maybe two or three,
And I thank you.

And then there are the beings, the friends, the family,
        the people who have passed to the other side
        whom I have referred to often – my Mother,
        Daniel, Kent, Nava, Gary, my uncle Frank,
        my aunt Gerry, and also I think of Skip, or
        "Skipper", and many of the other patients that I
        helped to take care of when I worked at the
        Hospice.

While I was at the Hospice at Mission Hill for about 3-1/2 or 4 years, over 350 people came and left during that time, and many, many more before and after the time that I worked there. But during the time that I worked there, I was part of the team, who worked for, who cared for over 300 people. They came there to die. They came there to pass on to the next place. And many of those beings are there for me now on the other side.

And I thank them. I am grateful.

So what have I gained? This is what I have gained. At night, and every morning, I begin my prayers with:

That little mantra, or prayer, begins my prayers, and it is something that I feel very deeply from the book by the Russian monk, the wandering monk, called- "The Way of a Pilgrim", which I read several years ago. It has been profoundly inspiring and effective for me to follow the journeys, the biographies of great saints, or great seekers. It has helped me a lot. I feel that I have been a seeker all of my life, although parts of my life I didn’t know it, and I never used to be a very strong Christian, especially growing up or as a young adult, and I certainly think of Christianity for myself personally much differently than I see it being in the world for many people or the way it has been for so many years. But for me personally, I know the presence of Christ, and all the angels who work for me, work for humanity and work – or serve, I should say, serve – selflessly serve for Christ, and Christ is the greatest power, not necessarily one being, but the greatest power of love, and I am grateful for that.