I am the guy who can’t ever seem to just enjoy a movie. I try really hard, I really do, but inevitably I find myself looking for gaffes and mistakes in the movie.

The other day I called for my son and daughter to come into the living room….I wanted to see if they could see what I saw. I must have played and replayed the movie clip half-a-dozen times. I kept giving them more and more hints.

They have played this game many times with me. Finally, they gave up.

The scene in question was a man sitting in a car talking. The window of the car was down. I said, “look very carefully at the whites of the man’s eyes.” They still didn’t see anything. Finally I gave up and said, “Look at the whites of his eyes and you will see the reflection of the movie camera outside of the car.”

That is just how it is for me. I suspect this is due to my perfectionist, OCP tendencies. I have always been this way. If my kids had a dollar for every time I said to them, “what time was it in the scene we just watched?”, they would have a good bit of cash.  Most often, I get the rolled eyes look that says Dad can’t you just watch the movie?

The truth is, no I can’t.

A while back my counselor wanted me to watch a particular movie. He told me, “now Bruce you are going to have to turn off that analytical mind of yours.” Then he chuckled, and his chuckle told me he was thinking, “good luck with that.”

My medical doctor told me years ago that he thought  I had a mind that never seemed to shut off. That’s why I have always had trouble falling to sleep. My wife can fall asleep in 2 minutes. Oh, how I wish to be blessed with such ease of sleep. Years ago, when I was slim, trim and healthy, it took me several hours to fall asleep. I had to have a slow, methodical wind-down. These days, bad health, muscle spasms, and unrelenting pain, make sleep a rare luxury. I often wake up several times a night and on many nights I am still up when my son gets up at 5 AM to go to work.

When Polly and I first married I taught her to be aware of her surroundings. This was no man over woman type of thing. I was more concerned for her safety. I wanted her to lift her eyes and look around when she left a store and walked into a parking lot. Who is standing where? How are they acting? Who is in line at the ATM? I am convinced that many crimes occur because people simply are oblivious to their surroundings. (and this applies to matters of religion and politics. People simply don’t pay attention to what is going on around them)

When I taught my children to drive I told them it was very important to pay attention to what is going on down the road. We live in an area where most auto fatalities occur from cars running stop signs on side roads. This area is very flat and people become inattentive as they drive down flat, straight roads. That is until they run through a stop sign and someone dies. It is crucially important to pay attention to the car rolling up to side road stop sign down the road. Anticipate! Think! Are they going to stop? If they don’t, what should I do?

I also taught my children to pay attention to others when in public. Most often, this was just a matter of courtesy. Don’t walk down the middle of the store aisle. Don’t string your shopping cart across the aisle. Walk to the right when people are coming your way. Careless, inattentive people frustrate me.  Does this mean I am a better person? Nope, just means I have a lot more stress than many other people.

There are days where I wish I could just float through life with nary a care in the world.  I wish I could just watch a movie and not pay attention to the gaffes. I wish I didn’t have to analyze every article I read and every report I hear.

As more than one person has told me, “Bruce you ask to many questions. You are never satisfied.” True, on both accounts. But, this is who I am. As much as I might, at times, want it to be different, this is who I am.

I voted for Barack Obama in 2008. I bought in to all the Hope and Change. In a rare moment, I paid more attention to the rhetoric than the facts. Here we are now…2012, and President Obama is hoping I will do the same again. Sorry……ain’t going to happen. I have spent the past 4 years paying close attention to what the President has ACTUALLY done. His speeches won’t sway me this time and his rhetoric falls on deaf ears. If anything, President Obama has taught me how important it is to PAY ATTENTION.

We are a Nation, dare I say a World, that is teetering on the precipice of an abyss and we seem quite oblivious to what is going on around us. As long as our must-see TV programs are renewed and McDonalds continues to sell Chicken McNuggets all is well. Things that matter, things like global climate change, industrial farming, concentrated agricultural facilities, nuclear proliferation, antibiotic resistant bacteria, and class warfare are rarely talked about. Instead, way too many Americans are fixated on the Kardashians, Lindsey Lohan, and whether or not Snooki’s boobs are real.

Politicians and corporations bank on the fact most people don’t pay attention. Kraft really doesn’t want you to know that a quart of Miracle Whip only has 30 ounces. Since people often notice price increases, what better way to snooker the public than keep the price the same while reducing the product size.

I say people pay attention to prices but I wonder if they really do. The other day I saw that Amazon was selling Bar Keepers Friend Cleansing Powder for 5.00. It had dozens of reviews. Surely, Amazon has the lowest price, people think. Nope. Same product is about 2.29 at the local grocery. Big companies like Amazon and Walmart do their best to convince people that they are the one-stop shop, lowest price store. Sometimes they are, but unless a person pays attention they will end up paying more than they need to. (and paying more is fine as long as we KNOW we are paying more. For example, I will pay more to buy locally.)

How about you? Are you a pay attention person or do people like me irritate the hell out of you? (my wife and children are banned from commenting on this post. ) Just kidding….

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If you have a strong body and good health you are indeed blessed.

I remember a day when I had good health and a strong body.

I remember being able to do whatever I wanted to do.

I remember hours spent playing basketball or softball.

I remember playing tackle football after church.

I remember walking for hours in the woods hunting deer, rabbits, or squirrels.

I remember hiking in the Huachuca Mountains.

I remember hiking to the top of Miller Peak.

I remember working long hours, with little sleep, and getting up and doing it all over again. And doing this for days and weeks on end.

I remember what it is to be a man’s man.

But, that is all I have these days……..just memories of a life that once was, a life I will never, ever have again.

Usually, at this point, someone is thinking, “I wonder if he has tried______________?”

Whatever you were going to put in the blank space, I have tried it. Diets. Foods. Drugs. Supplements. Tests.

Been there, done that.

I know you care and that’s why you send me the “new” information you have found. I know you want me to be in good health again.

But, it is not to be.

There is no fixing me.

God didn’t fix me, prayer didn’t fix me, and all the king’s horses and all the king’s men can’t put Bruce’s body back together again.

Life becomes one, slow, painful slide towards death.

Sometimes, I get periods of time where life flattens out. No new problems to deal with, no new adversity to fight.

These times become what I call The New Normal.

18 months ago, my right elbow started swelling and hurting. I went to the orthopedic doctor and he gave me a cortisone shot. The elbow problem went away.

About 9 months ago, my left elbow started swelling and hurting. I went to the orthopedic doctor just like before but this time the cortisone shot only lasted for a while and then the elbow began swelling and hurting again.

There isn’t anything structurally wrong with my left elbow. It just swells and hurts. It has been this way for months now.

My left elbow problem becomes a part of The New Normal.

Just one more thing to add to a long list of things I must deal with every day.

Think this is no big deal?

Add to the elbow problem, swollen and painful hands. Add to this chronic, never-far-from-me, lower back pain.

Then………think about wiping your ass.

A simple bodily function, yet it requires me to grit me teeth to stand the pain as  I try to do what billions of people do every day.

The New Normal.

Family and friends rarely inquire these days about how I am doing. I understand. They see me handling The New Normal so they assume I am doing just fine. They have their own lives to live, their own problems.

Those of us who life which chronic illness and disability often feel like we are just another piece of furniture. While everyone else is busy living life to its fullest, we just try to get by til tomorrow. They get so used to use being right where we are that they forget about us. Often, we become invisible to those we love the most.

I have no answers to this problem. I don’t fault my family and friends. I have very little to offer them these days. I don’t contribute like they do. I am just taking up space.  In the busy-ness of life family and friends assume that I will be here tomorrow. Just like every other day. I am right where I always am. A life that pretty much covers the distance from the bedroom, to the bathroom, to the Man Cave, and to the living room.

If I feel up to it  my world expands to the yard or a short drive to a nearby town to shop or eat. These trips become harder and harder to do. When you can’t drive you have to rely on others to take you here and there and let’s face it………they have a life too. So…….for the most part, I suffer in quietness and loneliness. Maybe I should have been a hermit.

This is my New Normal.

I have no power to change any of this. All I can do is adjust to my New Normal.

One of the hardest things for someone with a chronic illness to do is to embrace their reality. We remember a past when things were different. We remember a different life. In many ways, chronic, debilitating illness has made us into a different person. Whoever we were before is long gone. We must accept who we are NOW.

Often, the great struggle is not with pain or lack of mobility. The biggest battleground is the mind. With our mind we can bring up memories of the past. With our mind we can survey the present. With our mind we can gaze into the future. Often, despair sets in.

It should come as no surprise that many people who have chronic, debilitating illness see a counselor on a regular basis. The mental toll such illness brings is overwhelming. Struggles over meaning and purpose become matters of life and death. The counselor often becomes the firewall between the sick person and the gun or pills. I know that is how it is for me.

For you who are healthy and full of vim and vigor this post probably sounds defeatist or even whiny. “I should be glad I am alive or that I have a spouse and children who love me,” some might say.

I wouldn’t argue these points but I do wonder how they might respond to life if they had to walk in my shoes for awhile?

Imagine losing your strength and vitality. Imagine losing the capacity to work and do things that give your life meaning and purpose. Imagine there never being a day or moment that you are not in pain. Imagine your life being reduced to sitting in a recliner and watching TV hours on end. Imagine not being able to drive and having to be driven everywhere you go. Imagine a life of walking with a cane or being wheeled around in a wheelchair. Imagine this is your life day in and day out. Imagine going to sleep only to wake up and start it all over again.

This is my New Normal.

I write this post not as a complaint or an attempt to elicit sympathy or understanding. I write this post to give voice to my fellow sufferers. I write so they can know that there is someone else who understands. Perhaps, united in our suffering, we will find the necessary strength to make it another day.

Pictures: Bitstrips and Lisa Copen

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