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.

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.

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.