One More Thing

I haven’t written for a long time, and I’m having problems with writing today.

Sitting here with me are overwhelm, and self disappointment.

I’m having seizures. Again.

Decades ago I had frequent seizures every day. Then I got a pacemaker (heart stopping = brain damage => seizure focal point). Several years after the pacemaker was implanted, my seizures went away.

Now the seizures are back, just in a different form. For the past few years I’ve noticed the seizure sequelae (the after seizure problems), confusion and extreme exhaustion. I just didn’t put it all together. Currently the seizures appear as vagus nerve issues – hiccups lasting for hours, swallowing problems, choking, etc.

These new seizures started slowly. This gave me time to remove the emotional issues – mainly PANIC. My wife was a huge help. She gently hugged me and rubbed my back. Her deep love helped me realize that the panic was not part of the physical issue. I couldn’t control the hiccups, choking … but I did have some control over the panic.

With the new diagnosis, I feel once more cast adrift.  [I can hear some of my friends trying to help by saying “Look at this as a freedom, a moving forwards, and a further understanding.” But right now that’s not how it feels.]

Last time I lost my company, had to declare bankruptcy, lost my ability to read and write, and lost some ability to understand the spoken word. Emotionally, spiritually, and psychologically this hangs over me. It colors my experience of the seizures and the post seizure time.

I’m working on differentiating the past from the present. It’s hard and painful work. I feel separated from most everyone except my wife. Part of this is the deep snow and how far we live out in the boonies. Part of this is a post seizure sequela that lasts for many hours.

Part of the differentiating process is looking at my successes and failures, health and illness, extroversion and self judgment. I’m trying to look honestly, deeply, and gently at past issues and events. It feels like good work to learn and grow with.

This is the challenge I have been working with the past few months, and the main reason for not writing.

Peace to you all. Shalom.

Stress Avoidance

I put so much stress on my wife. Much of it appears to be a transference from me to her.

Because of my thyroid and adrenal gland problems, (as well as my other health issues) I cannot handle much stress. The stress might come from a movie we are watching where one person does something stupid and harmful to another person, or the news, or anything having to do with “The Donald.”

As the stress starts to increase I begin to shiver inside. My brain shuts down to most logical thought, as it jumps from this one case of injustice and how it hurts people, to a related case of injustice and its effects, and then to injustices related to that, and on and on. Each case of injustice hurts my heart and increases the stress. My shivering increases which makes my normal, constant physical pain increase. A terrible spiral into physical, emotional, and mental pain.

It’s like body surfing in a river of endless white water rapids. Barely catching my breath before being plunged deep between rocks and water. Bubbles all around, but no air to breath.

So,

I avoid talking (or reading, or watching) about “The Donald” and other purveyors of the white water injustices.

Leaving it all to my wife. She can’t use me to help exorcise her own anger with life’s larger stresses. She carries it all – for both of us.

In addition, she has to handle the stress of watching my body be battered by my diseases.

For a long time, I tried to minimize her stress by trying to hide mine. Soon, this devolved into a toxic spiral of barely contained anger and frustration, which was not good for either of us.

My current alternative is to try to recognize early when I fall into the white water rapids. Then I just stop the conversation/movie/story, explaining that the stress is overwhelming me. I know that my wife then carries the stress, but for now, I don’t know what else to do.

This process is helping me regain dry land, but my wife is paying the cost.

If I Had Cancer

I was reading about an acquaintance who was recently diagnosed with cancer. My heart went out to him as I applauded his decision to retire. I was about to say to my wife “if I had cancer, I’d retire and concentrate on the things that matter to me most.”

Before the words could come out of my mouth the reality of my life stepped in. I do have cancer. I just rarely think about it.

Cancer is not causing the majority of my pain or exhaustion, nor is it affecting my breathing, balance or foggy mind. Cancer is not the main cause of my frequent doctor or hospital visits.

Other diseases are much more problematic for me on a daily basis. So, the “Big C” is not forced into my daily awareness. There are three other reason that are probably the main actors in why I don’t think about my cancer.

Firstly, when I tell people I have pancreatic cancer, I can see the reaction in their bodies and the sorrow in their eyes. Even after I tell them it’s slow-growing their interactions with me are subtly changed until they too put it out of their thoughts.

Secondly, quite honestly cancer freaks me out. From up close I’ve watched my mom, aunt, and two good friends be eaten alive by this disease. It’s a miserable disease from which to die, and a horrible thing for loved ones to watch.

And finally, at this point there’s not a lot we can do. With current methods, I’m told that the recovery time from this type of operation would be 12 to 14 months with significant discomfort. On top of my other illnesses, I’m not sure my body could take. Also, it looks like some robotic surgeries may be available in the next few years that would vastly reduce the surgery’s assault on my body.

And I guess, above all these reasons, I don’t think about the cancer because, in my mind, cancer equals illness and possible death. Even though I’m constantly dealing with illness, my orientation is almost entirely towards life and joy.

Thinking about my cancer doesn’t really distress me. Even thinking about my death is, most of the time, not a big deal.

I’m a deeply spiritual man and I care about people. In this life there are things I can do with these issues about which I care so much. There is nothing I can do about what comes after death except live my life according to my ideals and ethics. [I have a belief about what happens to us after death, but that is a topic for a future post.]

Therefore, I concentrate on the things about which I have some control and which will leave the world a little better place after I’m gone.

Foggy Days

Days like today are traumatic.

Most of us who are over 40 have times when it’s difficult to remember or think clearly. But this is different.

Today, I am lost within my foggy mind. Today words get lost in the fog. Words like “refrigerator,” “door,” and “broom” just won’t appear when needed.

I’m also lost in space. In our little, temporary, home (all of 225 ft.²) I can’t seem to find where the door is or the refrigerator. There’s no panic like being lost in the woods. It’s just that nothing seems familiar, neither this cabin we’ve been living in for a year and half or my mind trying to find words in this brain I’ve been using (on and off) for the past 65 years.

This is the first time in the last six months or so that I’ve been lost in the fog. I don’t know what brings this on, nor what will make it go away.

I’d like to be able to say that writing this post is a stream of consciousness effort, but it’s not really. I really don’t have a stream of consciousness. That is, that there is no flow from one thought or one paragraph to another thought or paragraph.

Writing in any intelligible form is an immense effort to maintain a deep writing meditation. I imagine this will require a lot of editing, but I feel that it’s important to share what it’s like to have aphasia along with some other stuff. [“Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.” Mayo Clinic]

On these foggy days it’s difficult, and sometimes impossible, to think things through:

When the peanut butter, jelly, and bread are on the table with a butter knife in my hand, what do I do next and where’s the butter knife?

With my wife asking me how were going to pay for snow tires for car, how do I add $400 and $500, and what’s a “snow tire,” and I know she was asking me a question but what was it?

My wife says “Hey Hon, there’s more carrots in the refrigerator that’s in your office.” [Yes, I share my office with a refrigerator, a pantry, a water heater, a washer and dryer, and the freezer.] But my mind freezes when she says the word “refrigerator.” I hear the word but I don’t know what it means and I can’t ask her because I can’t say the word, no matter how hard I try.

These are just three of the myriad of things that happened to me today in this foggy world.

I used to get very disturbed by losing my way in the world and in my thoughts. But that didn’t lead me anywhere near joy. So I searched, and thought, and prayed, and I found the blessing.

I’m a brilliant guy with a good heart. But viewing the world from this honored place is not where the majority of people live. Living in this fog has helped me realize how very special that other place is and how much I want to use those abilities, to be of service to others.

I guess I’m done because my mind is going into a deeper fog. I need to go lay down and take care of myself.

Balancing

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.