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.

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.

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.