Today is my day in the hospital. That sounds so dramatic.

Every month I’m here in this sweet little rural hospital – kind people and a world-class view. But it’s still a hospital with all the smells and sounds, being stuck indoors, the loss of autonomy, and all coupled with a slight tinge of fear.

I’m a trained chaplain and I have some questions for me:

Chap: This morning, did the fear start before, during, or after your ride into the hospital?

Me: Part of it started long ago, but it really built up on the ride in.

Chap: Going back – hours, days, months, and years – when did you first feel this way?

Me: In Rhode Island, I think. I’m about six or seven, we are on the way to the hospital. My parents are scared and anxiously whispering in the front seat. I have a high temp and am in and out of hallucinations. Then I’m in the hospital with the noise and smells and nobody telling me anything. It was terrible with no anchors to ease or life.

Chap: And how is that similar/ different from today?

Me: The sounds are the same, but less sharp. The smells are similar, but less acrid. There is the same sense of being stuck somewhere I don’t want to be. And there are the same fears – fear of dying, fear of not knowing what might happen next, and the fear that this is the end.

Chap: What is the difference between the fear of dying and the fear of this being the end?

Me: The fear of dying is about the process being tough. The sounds of alarms going off, people in panic but mechanically holding it together. The bodily abuse as they try to hold my body to life. The fear that this is the end is about all the tasks I have yet to do ( more books, more seminars, more loving, more helping). So many things incomplete.

Chap: Which feels larger or more significant?

Me: The fear of dying feels more like a little kid thing, for me. Whereas the fear of leaving so many important things incomplete is with me quite often, especially when I’m in the hospital.

I’ve been working on moving some big things to a state of temporary stability, but my health keeps getting in the way. Frequently my frustration is way bigger than my fear. The two mix together into an anxiety about bringing things into semi-stability, and a fury at the disease for causing so many obstructions. This anxi-fury becomes especially acute when laying here in the hospital.

Every hour I lay here feels like a wasted hour. I’m here because it is necessary for my body and will aid me in the future. In a way, this down-time aids me to understand the anxi-fury and how it moves me, sometimes, in a not-so-good direction.

For example, rather than my taking this day as a healing day with meditation, prayers, and rest, I’ve pushed myself to write a blog and think deeply. These are good things, but today is supposed to be a healing day: a day for helping my body to a quieter and healthier state.

Living with the anxi-fury and healing my body is a difficult and dynamic balancing act.

The Muddle of the Future with the Present

Each of us has our own way of pulling ourself through hard times.

One of my main methods used to be: “There is an end to this. Things will be better.” This doesn’t really work now that I’ve been sick for over a decade and facing an illness that may kill me sooner than later.

Sometimes when I’m in bed, and the pain is bad, I’ll think about “How do I keep going?” Over the past ten years my answer has been to throw a hook into the future and use that as my lifeline.

For example, I find something that intensely interests me and then commit to it. My latest lifeline has been teaching a seminar on leadership this fall. I deeply believe that the way we do leadership in today’s world is really messed up. Leadership seems to be more about power and control than understanding and help. But many of the models I’ve seen, even of servant leadership, where the leader is supposed to be the servant, don’t really put understanding as primary. [You can’t truly lead people if you don’t understand them first.]

Lately I’ve started to see my energy wane, my pain increase substantially, and my future horizons seem much less sure. My old way of pulling myself through hard times, with an anchor into the future, isn’t working as well anymore.

This is not a crisis of faith. My faith in God is stronger than ever.

I am facing a crisis of not knowing. Not knowing how much longer my body can hold on. Not knowing what the true diagnosis of my ailment is, not knowing if I’m going to make it to the end of the year or the end of the decade. Not knowing if my next trip to the doctor’s will help me or hurt me.

This crisis of not knowing is not a terrible thing, but it is a very human thing.

Would knowing that I only have a few months to live be any easier? No. It would just be a different type of crisis. The one I am facing now still needs a lifeline to pull me through, it just needs a different one.

As I ponder this issue, I feel joy.

Figuring out how to pull myself through this moment and these times is a living problem. That is, it’s the recurrent issue all of us face in life. It’s just that now it’s presenting a different set of challenges.

For me this crisis boils down to two questions:

  1. How do I find joy?
  2. How do I grow ever closer to God?

For me, working on these two questions, in and of itself, brings me joy. At heart I’m a scientist and a Rabbi. As a scientist it is the search for answers, not the answers themselves that is the work. As a Rabbi, the work is to help others along their pass towards God. As a Rabbi, this blog is part of my work.


Missing The Mark

I have this image of myself as being transparent [not in the Netflix movie “Trans-parent” definition]. This disease is helping me find out that I am much more hidden than I would like.

When I had Lyme disease it was a specific diagnosis with a specific, though terrible, therapy. After 30 years of suffering with Lyme, it was finally properly diagnosed and treated. It left me with many lingering problems some of which maybe created my current disease.

The “maybe” is my problem. We know I have some current severe disease, but the doctors can’t agree, yet, on a diagnosis. This creates a situation where I don’t even know how to talk about this with myself. So I don’t talk about it with others.

This makes me significantly less than transparent talking about one of the major factors in my current life. When friends and family ask me how I’m doing, I answer vaguely. Typical responses from me are “Moderate,” or if I’m doing slightly better “Okay” or “So-so.”

My self-image says that I should be letting people in on how difficult this disease is for me, in a way that doesn’t ask for sympathy, just understanding. I don’t know how to do this, my only idea so far has been this blog (actually it was my wife’s idea).

She and I have developed a system that helps communicate what’s going on with me. There are three scales:

  1. Nausea – “None,” “moderate,” and “I can’t even think about food.”
  2. Pain – On a scale of 0 to 10, zero being no pain and 10 is passing out from pain.
  3. Life force – On a scale from 0 to 10, zero being “I’m dying now,” to 10 “I’m strong and vital.”

This allows me to share with her some how I’m doing without my having to be fully involved with the ills of my body. The issue of being fully involved  in my body is that a) it takes a lot of time to inventory my various parts, and  b) that fully noticing the pain, nausea, lack of air, etc. is really not fun.

Most of my time I spend slightly removed from my body. I know many reasons why this adaptation is not ideal, but it allows me to keep going while still really enjoying life.

I hope this post helps you understand how I’m doing, and in the bigger context helps you empathize more with yourself and others who are suffering.

Death and Faith

Had a long day of tests yesterday. The test results had me considering my mortality once again.

What if my end comes soon?

I find myself surprisingly unfazed. Why aren’t I upset by the thought of dying?

Upon deep introspection I find that it just doesn’t feel like dying will be the end of me, as I know me.

I do not have a belief in heaven with angels singing and me sitting with God. It’s just that every time I looked deeply into the nature of reality, the universe, and God, I continue to be amazed at the awesome complexity and at the same time amazing coherence and unity. Out of the complexity is a simple – more.

I know skeptics who feel that this is all there is. For them, the results seem to be an emotional dissipation coupled with an indistinct desire for society to improve over time.

For me, everywhere I look there is more. There is more to life than just me. There’s more to the universe than we know. There’s more beauty, more of love, more honesty than I have ever touched or even can imagine. With my science and mathematics background I know that this universe is just part of something much bigger. With my mystic faith I can feel the vibrations of the more.

The one thing I am sure of is that this universe, this life, is filled with more.

If the universe is based upon/created through this more, and since I am part of this universe, then I am part of this more.

This more-ness feels true.

If I am right, or if I am wrong doesn’t really matter to this moment. My orientation towards the more has made me a better and wiser person. I have lost nothing by my belief and I have gained a marvelous life.

Within this more I can find no definitive reason not to believe that “I” will continue. It’s possible. It makes me a better person. It feels true.

Zip Lines & Fairs

Had a great day yesterday. First day in well over a month that I felt this good. Went to the Trout Lake Fair. It is really marvelous being in a small town that is justly proud of itself.

Paying for the activity today. Couldn’t even get out of bed until well past mid-afternoon. It was well worth it – great day, wonderful people.

Here is a video taken by my loving wife. The sawing you hear is the double buck contest [huge two person saw] which was going on right behind us.

The Guest House

The Guest House
by Rumi

This being human is a guesthouse.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture.
Still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
Meet them at the door laughing and invite them in.

Be grateful for whatever comes.
Because each has been sent
as a guide from beyond.

Breathing Through Life

Last night I was sitting out on our porch watching the stars appear. I concentrated on watching a blue-black patch of sky slowly show one star, then two,….

I concentrated with quiet dedication. Quiet, except for my gasping for breath.

Watching the stars was so much better than being in my body, panting.

I have a disease (noncommunicable) that destroys red blood cells. There is a parasite that lives inside my red blood cells (the cells that provide oxygen for the entire body). When the parasite spawns, it bursts through the red blood cell’s wall, killing the red blood cell, thus depriving my body of oxygen. It feels as if I’ve just run 10 miles.

But the feeling doesn’t go away as I sit watching the stars. After 10 minutes it still hasn’t eased, not even a little. The feeling of oxygen starvation goes on and on. Panic starts to creep in, and thus I sit in quiet concentration looking at the stars.

It’s so much better to watch the stars appear – blue, red, white and yellow – than to think about how thin this atmosphere of ours is. Such a thin layer of oxygen supporting this world as we know it. If I allow the air hunger to enter my mind, I’d be overwhelmed with panic.

Watching the stars appear, God’s glorious canvas, this way lies peace, in the midst of the whisper thin breath of air that keeps my body alive.

I hate the drama – a guy sitting, or on hands and knees, panting for breath, minute after minute after minute. I have no control over how others view my distress. But it doesn’t mean I have to appreciate the image.

I view myself as a strong, vibrant, healthy man. But the truth is that as hard as I’ve tried to keep in shape, this disease has much more control than I do. I’m healthy but for disease that is actively trying to kill me in an anxiety prone manner. I am healthy but for the nausea that prevents me from enjoying even the thought of food. I’m healthy but for the pain and exhaustion that so often keep me in bed.

Long before I knew what the disease was, I knew that something was dragging me down. I knew I had a decision about what I wanted my life to look like. I decided that the dis-ease was important to take care of, but far less important than helping this world become a better place. And for that, I needed to be centered, quiet, and creative.

So I sit out on the porch, watching God’s world unfold. The ease – and quiet – and stillness – all help feed my creative soul. I can’t even imagine allowing the disease to win over my life – the confusion, terror, and fog have no appeal. The way of the disease may appear easier than the struggle to to feel God’s presence and to be a creative force. But the disease-way is a false path – filled with just enough truths to interest the scientist within me, and enough pitfalls to make it a poor way of dying.