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My Thoughts - Mortality and Death

“Time is a great teacher, but unfortunately it kills all its students.” Hector Berlioz
I have been encouraged by friends to write this. Some friends said it would be good for me and some said it might help others that are in similar circumstances. I’m not sure about either reason, but these are smart people and I trust them. I hope this doesn't upset anyone. I don’t want to cause distress to any of my friends here on Stories Space. I was concerned this might not be appropriate for this site, but I think that is probably due to my hesitance to share some of this information.

As we get older, the inescapable truth is that our body weakens. It affects us all differently, but no one is immune. We can take care of ourselves or neglect our health as we live our lives. Our actions and lifestyles can affect the speed of our eventual physical decline, but there is no surety that the outcome will be parallel with our actions. Some people drink and smoke to excess while never take care of themselves, but still live to be a hundred years old. Others treat their bodies like temples; taking care of their health in every imaginable way, only to die of cancer at the age of 24. It’s not fair, but anyone old enough to read this should know that life is not fair. You should still take care of your body. The examples I mentioned exist, but are the exception; not the rule.

I was tough on my body during my life and often pushed my body past what was safe. I strained and abused my body to accomplish my desires and goals. As a teenager I did strenuous physical activities that I should not have while I was injured or sick. When I was sixteen years old, I caught both ends of a double header in one hundred degree temperature. I cracked two ribs in the third inning of the first game during a collision at the plate. I went on to lead my team to a sweep of both games. I got five hits, drove in seven runs, scored four runs myself, and stole 2 bases. After the games, I went to the emergency room for treatment. I had lost twelve pounds during the two games; I normally only weighted one-hundred and forty pounds. Most of us as young people do those type of foolish stunts. As a young adult our bodies are resilient, but over time the accumulative effect will be felt later in life.

As a young man I drank too much, but did learn the virtue of moderation. Now, due to my medications, I’m not allowed to drink at all. I was just chatting the other day with my friend Carl and mentioned how I missed having an occasional sip of whiskey. I smoked for many years, but now I almost never smoke.

I am only 55 years old (in August), but my body feels much older. The expression, ‘rode hard and put away wet’ comes to mind. I have a few physical challenges just like most people that have a few years under their belt. For many people age can be equated to pain and stiffness, but we persevere.

Almost a third of people, at my age, have some form of tinnitus and many don’t even realize it. It causes a ringing (actually a buzzing) in the ears. The ringing in the ear isn’t real noise. It is a signal sent to the brain that the brain interprets as sound. Sometimes, when there is very little sound to keep the hearing center of the brain busy, it will interpret the impulses differently causing you to hear sounds that don’t exist.

Late at night I would lie in bed and I thought I heard voices in my house. My wife never heard anything and told me I was hearing things that weren’t there. She was right, but not in the way she meant it. I could never hear words or distinct voices only murmuring. I truly thought I was hearing either ghosts or was hallucinating. I didn’t think it was a ghost, it didn’t sound right. At least it didn’t sound like the one in our basement. Yes, we have a ghost or spirit or something in our basement, but that is for another story someday. I was worried there was something mentally wrong with me. I was right, but more on that later.

I had read an article about tinnitus and it sounded familiar. I asked my doctor about tinnitus and if I could have it. Within a few minutes of examining me and asking a few questions, he said I probably did. During his explanation to me about tinnitus, the doctor mentioned it could cause sound hallucinations. I was really surprised and told him about my night-time voices. He explained the way that tinnitus works and how it was affecting me. I was so relieved that was the reason for the murmuring voices.

I also suffer from severe chronic arthritis. Almost every joint in me has arthritis including, strangely enough, my jaw and sternum. Many of you already have had the unfortunate experience of arthritis. It will never get any better, only worse. It is pretty bad, but it is only pain and some stiffness for the most part. With proper pain management, that means drugs and exercise, I endure. Rarely do I allow myself to give in to the pain. I’ve grown up with pain and had to live with it for most of my life. Pain and I are old acquaintances.

Most of us, who have seen a few years go by, have some kinks in the armor. It could be old worn out parts like bad knees, bad back, false teeth, bald noggin, poor vision, poor hearing or bad feet. Aches and swelling are common in a lot of these problems. Nothing makes my wife as happy as a hot soak and rubdown of her feet, well almost nothing. Not all of my parts are broken, yet.

Disease and disorders have had enough years to wear down our defenses; like diabetes, circulation problems, heart problems, arthritis, gout (my brother-in-law has that and says it's very painful), poor kidney function and emphysema are only a few of a list of many.

It eventually affects each one of us. Most of us adapt to the situation by changing our lifestyle, improving our eating habits, taking medications or any combination of these. I should write a piece on medications and it could be titled, ‘The Good, the Bad, and the Unbelievable.’ I try not to complain about my ailments because there are so many people worse off than me. Every once in a while, I’ll meet an older person who’s biggest concern is which vitamins to take. These people usually fall into three categories; unusually healthy, very lucky, or liar. Liars may not be doing it on purpose, they just haven’t found out how sick they really are yet. (i.e. “I haven’t been to the doctor in ten years so I’m not sick.”)

My first two medical problems, tinnitus and arthritis, are two of the most common ailments related to aging. I recently found out I have another problem associated with old age.

For the past couple of years I’ve been having some difficulty speaking. I would be talking and come to a word but be unable to say it. I knew the word. It wasn’t, as we sometimes say, on the tip of my tongue. I just couldn’t make it go from my head to my mouth. I had also found it more difficult to perform certain mental tasks that had always been easy for me in the past.

The next time I saw my doctor, I told him about those minor problems. The speech problem is called aphasia. The doctor was very concerned about that because he had been noticing it too. I didn’t understand what the big deal was. These things were only a slight nuisance at the time.

If you glean only one piece of knowledge from this, it should be to tell your doctor everything, no matter how insignificant. If it’s nothing, then no harm is done, but you could say something that sets off an alarm for your doctor. Discovering a problem early is never a disadvantage and it can mean the difference between life and death.

After five months of testing and about twenty doctors’ visits with my regular doctor or various specialists, my doctor had a long talk with me and explained what they found. I had figured out what was going on so I had done some research and educated myself on what was happening. I had a ton of questions to ask my doctor.

He knows me. He has been my doctor for almost twenty years. He knew I wanted it straight up and with as much detail as possible. We talked for over an hour. My wife sat quietly and listened. Her eyes got bigger, her breathing quickened and she got paler as the doctor spoke. She didn’t cry till we got home.

I probably have EOAD, early onset Alzheimer disease. I say probably because there are a few other things it could be. A couple of those outside chances are similar, but not much better. Most of the alternatives are worse either allowing me to live longer, but under more severe conditions, or have a faster progression. The amyloid plaques build-up in my brain is atypically less than they expected and the shrinkage of my brain tissue is well in advance of normal, but not as prominent as would normally be associated with Alzheimer disease. They may not be able to confirm the diagnosis for a while. There really are very few alternatives for me.

Now I know that my future has been determined and what it is. Unless something unexpected happens, I will be losing my mental faculties and then I will die. We all die, but I happen to know the itinerary and already have the ticket for my journey to the end.

Alzheimer disease is the most common cause of dementia and usually occurs in old age, usually at 65 years of age or older. I have the less common early on-set Alzheimer disease which occurs earlier. Although it can affect people as young as 15, early on-set Alzheimer disease normally affects people between the ages of 50 and 65.

Except for the age of the patient, it is indistinguishable from standard Alzheimer disease. It is invariably fatal, generally within ten years of the first signs of the disease. The doctors I have spoken to have told me that because they are learning better ways to deal with the disease that I can probably add a few more years to that figure. Some doctors said three years others said five. Obviously the doctors the said three years are wrong.

I showed my first symptoms when I was 53. That means no social security checks for me.

I have the usual signs of Alzheimer disease, unusual memory loss especially of recent events. I’ve never been very good with names, but my ability to remember the names of acquaintances, friends and family have noticeably worsened. A major factor in my diagnosis was the inability to name objects, decreased ability to process syntax and even the meaning of words. This is a form of aphasia known as logopenic primary progressive aphasia.

These conditions began as mild irritants and over a twelve month period worsened to make it difficult to have a normal conversation. It was very embarrassing. I started speaking less and much slower. I pick things to say so that it appears much better than it is. I often forget things.

My short term memory has more holes in it than Swiss cheese, but I’m a very intelligent person and I can usually figure out what is going on or at least cover up for my lack of memory. I’ve gotten pretty good at hiding my symptoms. My family doesn’t realize how much it is affecting me. I can tell how bad it is becoming because I take notes about everything now and it is often discouraging to find so many notes that I can’t remember writing.

Here on Stories Space there is a notepad button on each bio page on the banner right under the Stories Space name. All of the notepads for my friends, people I talk to, or read their stories have things annotated about them. I find it troublesome, but necessary to pull up a bio and read the notes I wrote about the person and their stories. Very often I find notes about you that I don’t remember or don’t remember all or part of a story I really enjoyed.

As the disease progresses, all of this will get worse.

Eventually even more serious problems will surface. I will have serious mood swings and have less control of my emotions and behavior.

This worries me the most. I don’t want to burden my family and friends with a raging lunatic who rants and raves for no good reason. My inability to control my emotions and remain a rational person scares me more than anything else, including death. I don’t want to mentally abuse or torture the people that I care the most about. I don’t want their last memories of me to be hateful and distressing.

I will eventually become unable to perform complex activities such as driving or cooking. As the disease progresses I won’t be able to do even the simplest tasks such as brushing my hair or changing my clothes. I will need full-time care until I eventually die. If there is any interest, I will write a piece which will give a much more complete explanation of the disease and its progress, but it is very dry material.

I will fight to the end, but the thing I fear least of all is death. I’ve had a wonderful and full life. I did more with my life before I turned thirty than most people do in their entire life.

I’ve had a wonderful companion, my wife Liz, since I was twenty. Two sons, two daughter-in-laws that are truly just daughters to me, five grand kids, and four very good friends have made my life extraordinary and full of joy.

I have served my country faithfully through pain and peril. My military service was like everything, important to me; I gave more than I should have but less than I wanted to. I have had the unbelievably wonderful feeling of saving a life and the horrific nightmare of taking one.

I have almost died five times, but I never thought I would during those times.

I have met so many people and they range the entire gambit from total worthless pieces of flesh to fabulous people that I wish I had spent more time with. I’m glad I met them all. With the good you have to have the bad.

What can I say; I was lucky and got to experience so much.

I’m very surprised at my lack of distress. Knowing what is ahead for me has not made me angry, sad, or scared. I know things are going to get bad, but I think I will be OK. I have been told, “God never gives you more than you can handle.” I trust that I will handle, as best as I can, what is in my path. I realize that towards the end, I won’t be handling things because it won’t really be me anymore. I will reach a point were what is left of me won’t be the person I am, only a shadow of that person. I accept that and I will make arrangements so that my family and friends won’t have to deal with the worst of it.

My wife says she understands and will be alright. She isn’t ready, but I hope I can help her be ready when the ‘tough’ decisions have to be made.

I joke about my Alzheimer. Like everything in life, it can be laughed at. When I go to the doctors usually one of the first things they ask is, “Have you been forgetting things?” I guess they don't think about what they say? If I have forgotten something, how would I know, so that I could tell them? I just smile and say, “I don’t remember forgetting anything.” Then my wife tells them the things she knows about that I had forgotten.

I often remind my wife of the advantages of Alzheimer disease. I’ll be able to watch ‘The Sixth Sense’ repeatedly and be surprised every time. Seriously, I know that Alzheimer disease isn’t funny, but people’s reactions to it sometimes are. I guess, just like any serious medical situation, most people don’t know how to react.

I’m not writing this for pity. I don’t want your pity and I don’t want you to feel bad about it. I don’t feel bad about it, really I don't. Please don’t make me feel bad about making you feel bad. There are a lot of people worse off than me. It is what it is.

If you want me to feel better, then live your life to the fullest and enjoy it, then share that joy and happiness with me and everyone else. That would be better than saying how sad or sorry you are. Remember no pity and don’t apologize for something you didn’t or couldn’t do. You didn’t do this to me.

There is always hope. Improvements in medicine might keep me around for a possible treatment. Science is making advances in understanding how the brain works. There is hope, but I'm not counting on it.

I found a paper I wrote for a class I was teaching many years ago. It was about the basic principles of M-Theory (String Theory for you old timers). I read it and can’t understand most of it. I used to be very smart, but that’s leaving me.

The other day I tried to answer a problem with quadratic equations and couldn’t remember how they work.

What I do know is that M-Theory and quadratic equations are really neat, but they don’t help me love and care for my family and friends. So how important can they really be to me?

I plan on writing some of my thoughts about those things that I think are important. There is always hope. Maybe I can hang around long enough to see the Cubs win the World Series. Yea, right.

By the way, if you want to help me feel better, tell me some good jokes. Laughter is Gods medicine.

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