Living and Dying at the Sam's Club

© Bruce Gaughran - 2010
Rev. 08/2011

It was a hot and humid Saturday morning and I was on my way to the Sam’s Club.  This was my first trip to the club even though Jenny, my wife, shops there at least once a month.  She had encouraged me to go shopping with her several times before, but I always found some excuse for bowing out.  Unfortunately, Jenny was down with the flu and I promised to help with some of the chores including grocery shopping.

I must admit I have always felt that having to buy a membership to a warehouse seems a little bizarre.  I cannot see any benefit in buying merchandise for a slightly reduced price if you had to pay some ridiculous price to join the club.  Jenny, on the other hand, can justify the membership fee for the discounts. 

I still remember her trip to the club a couple of months ago to have the tires rotated on the van.  Since she bought the tires at Sam’s Club, she was entitled to free rotations for the life of the tires.  She said she had two hours to kill while waiting for the service, so she decided to go shopping.  When she returned home, she had a new coat, two pair of slacks, dress boots, and a sweater.   The free tire rotation cost $140.  And you wonder why I am skeptical.

As I pulled into the parking lot, my first impression of Sam’s Club was not positive.  I would guess there was at least ten acres of parking with eighty percent of the lot full of cars, trucks, and motor homes.  “What did I get myself into,” I muttered. 

I slowly maneuvered my way through dozens of people, shopping carts, and vehicles to the front of the store where my wife said the handicap parking would be.  She was right; there were at least forty or fifty stalls for those of us who need special parking arrangements.  Remarkably, there was not one stall available.  My blood pressure began to rise as I slowly drove down one row after another looking for a handicap stall or for a vehicle that did not have the proper license plate or handicap permit.  As I sat in the middle of a row trying to determine my next course of action, the car behind me began to honk.  I rolled down my window and flipped the car, not the driver, the international one-finger salute as I gunned the engine and took off down the row. 

By now I had wasted ten minutes driving around looking for a free space near the entrance.  Frustrated, I drove out to the “back 40” and parked so no one could block my van’s side door.  I needed room for my wheelchair ramp.  I locked the door and navigated my way towards the store. 

My wheelchair’s tires do not do well in hot parking lots where people have spit out their gum.  If there is any melted gum or suckers in the parking lot, my chair will find it.  This trip was no exception.  I arrived at the entrance and noticed that my left tire had pink stringy-like stuff circling the entire wheel.  I cursed because it would take me an hour to clean up that crap before I could go in the house.

My curse drew the attention of the family behind me.  The mother gave me one of those looks as she hurried her children by.  The club’s greeter welcomed me with a smile.  When she asked to see my membership card I panicked for a moment.  Did I bring Jenny’s card or was it still on the kitchen table?  I began a pat down of my clothing and fortunately found it in my right shirt pocket with Jenny’s shopping list. 

As I entered the club, Jenny’s description of what to expect was right on.  It was one large, over-crowded warehouse with aisles of product stacked from floor to ceiling.  When I looked at the height of the three-tiered shelving, I knew there was no way I could reach one-third of the items.  Yet, knowing I had conquered worse obstacles before, I charged ahead into the bowels of the warehouse. 

I was a little intimidated by the sheer size of the place.  I looked for some kind of directory to show me where I needed to go, but could not find one.  I then spotted the Help Desk sign on the other side of the warehouse and immediately knew where I needed to go.  Unfortunately, there was a long line.  A nice young woman told me I needed to take a number from the machine in the front.  I pulled ticket number 79 and went to the back of the line.  A couple of minutes later the loud speaker announced they were ready to help number 52.  Whoa!  I decided I didn’t need help after all.  It was time to blaze my own trail.

I found a shopping cart and immediately learned that it took considerable skill to push a cart when using a joystick to maneuver the wheelchair.  Unfortunately, I did not possess these skills.  After almost wiping out two children and smashing into an island of summer lawn furniture, I decided I needed to focus more on steering the cart.  Being a quick study, however, I soon learned that if I placed my feet on the back of the cart, I did not have to push with the hand.  Problem solved.

As I rode down the first aisle into the electronics section, I was amazed at all the different products that were available.  You could buy almost anything here.  But, finding someone that could answer your questions about a product was almost impossible.  I spent far too much time playing with the keyboards of the PCs, the joysticks of the video games, and remotes of the TVs.  I knew I had to bring our son, Duane, here.  We would have a ball checking everything out.  After an hour in this section, I knew I had better get a move on it.  There was a Braves game on TV this afternoon. 

I turned left out of the electronics section and almost ran into a table full of food.  When I saw the plate of meatballs with toothpicks stuck in them, my stomach growled.  Wow, it was already lunchtime and I had not found one item on Jenny’s list.  Well, there is always time for free samples.  I stuffed two meatballs in my mouth and took one more for the long trip down the next aisle.  Feeling slightly guilty for taking three, I threw a box of frozen meatballs in the cart.  Since everything is discounted, I reasoned it must be a good buy.

I looked down the center section and noticed there were several other tables of samples.  If any of those samples were as good as the meatballs, I would be a fool to pass them up.  I went from one table to the next, “sampling” the products.  By the time I had tried everything at least twice, I was now taking home four 48-ounce cartons of orange juice, one five pound fillet of salmon, one box of frozen pizza with six large pepperoni pizzas inside, and two 64-count boxes of meatballs.  Yes, I did say two boxes of meatballs.  After two trips to the table and sampling nine of them, I decided I should buy another box.  I had now learned the so-called “benefit” of shopping at a warehouse club.  Everything comes in giant sizes or multiple items per carton.  When I looked down at my shopping cart, I thought, “We are going to need a bigger freezer!” 

I was now ready to start shopping.  As I reviewed Jenny’s list, I became concerned that the frozen items in my basket might thaw by the time I finished.  With that in mind, I promised myself that there would be no more distractions.  I scanned the list and then started a focused run down the middle of the warehouse looking for the correct aisles.  Two loaves of whole wheat bread had to be in the bakery section near the front.  I tried to turn the cart around and almost ran over an elderly woman in a tank-top and hip-hugger shorts.  She had more tattoos than a retired Navy boatswain mate.  I apologized, but she scowled at me, mentioned my heritage and kicked the cart. 

I managed to turn around and make it to the front of the store without further incident.  I found the bread and tossed them in the cart.  My next item was spinach salad.  I believe I saw the produce section in the back of the warehouse near where I ate the salmon samples.  On the way out of the bakery section, however, I spotted the muffins.  These were not just any muffins.  These were the largest muffins I have ever seen.  Even better, they came in a carton of twelve … four each of chocolate, blueberry, and poppy-seed.  Well, they looked too good to pass up, so they also went into the cart.   

It is a long way to the other end of the warehouse, but I found the spinach salad and also the mushrooms that were #3 on the list.  I was feeling pretty good about my newfound discipline and shopping skills, but also thankful I was riding and not walking.  This place is enormous. 

The fourth item was spaghetti sauce.  I searched several aisles of foodstuffs without any success.  I finally stopped to rest my weakening left arm.  These carts are heavy.  A nice looking woman was coming down the aisle towards me, so I gave her my best smile and asked if she knew where I could find the spaghetti sauce.  She returns my smile and points me in the right direction. 

Off I go again, but I notice my left arm and legs are becoming a little fatigued from pushing the cart.  I turned down the next aisle and sure enough, I come across a half-dozen brands of sauce.  Unfortunately, each brand only comes in four or six jar lots.  Jenny had written “1” beside the spaghetti sauce.  Was that one jar or one carton?  Was that one carton of four or six?  Well, I did what any smart shopper would do; I checked the prices.  Buying six jars of the 24-ounce generic white-label brand saved $2.21 over the more popular brand.  As I shoved the carton on the rack under the basket, I beamed.  “Jenny will be so proud of me.”

While checking the prices of the hand soaps on aisle 47, I heard the “William Tell Overture.”  I pulled out my cell phone and saw it was Jenny calling.  “Hey girl, how are you feeling?”

“Better, honey, thanks for asking.  Where are you?”

“I am still at the Sam’s Club.  I only have three more items to pick up and then I’ll be on my way home.  By the way, I saved 97¢ by buying the 48-count generic toilet tissue.”

“Do you know what time it is, honey?”

I paused and realized I had no idea.  “No, not really.”  I looked at my watch, “My gosh, I can’t believe it's 2:30 already.  This is taking longer than I thought.”

“Honey, you have been shopping for over three hours.  What have you been doing all this time?”

I know my wife and sensed that the conversation was not going well.  It must be the flu making her a little grumpy.  “Well, there are a lot of decisions to make.  It is not like there is only one item to choose from,” I said defensively.  It was time to show her how well I have done.  “Look, you would be so proud of me.  I saved $2.21 on the spaghetti sauce and …” 

Jenny did not give me a chance to finish. “Frank, what else did you buy?”

I looked over my shoulder wondering if she was behind me.  How else would she know that I had bought something else?  Based on the tone of Jenny’s voice, I carefully considered how to answer her.  “Oh, just a couple of items on sale.”

“Like what?”

I told myself not to become defensive, but it was hard to ignore the challenge.  “Well, you know those fantastic muffins they have in the bakery section.  I know twelve is a lot, but we can freeze what we don’t eat right away.  And, the chocolate ones will be great with vanilla ice cream.  You know how our son loves chocolate and vanilla.  Should I also pick up some ice cream?”  Not waiting for an answer I continued, “Oh yah, I bought some frozen meatballs.  The salmon looked good, so I picked up a package of fillets also.  Let’s see, the club has a great price on frozen pizzas …” 

I never got a chance to finish.  “Pizza!  You bought meatballs, salmon fillets, muffins, and pizza.  They were not on my shopping list.”

“I know, honey, but they were all great buys.”

There was several seconds of dead air before she continued.  “Frank, I want you to listen to me.”

This time I had to interrupt, “Jen, what’s wrong?  I get the feeling you’re upset about something.”

“No, I am not angry … now listen.  I want you to return all of the items that are not on the list.  Then I want you …”

My defense mechanism had now kicked in.  “Jen, I do not understand.  These are all great buys.”

“Frank!  You will put everything back that is not on my list.  Then you will go to 'checkout'.”

 “Okay, I understand.  Put everything back that is not on the list.”  When she did not comment, I reassured her by saying, “Then I will pick up the last three items and head for home.” 

“You are still not listening.  Forget about the other items.”  I heard a deep breath on the other end of the line.  “Just return everything not on the list and then come home.  I will go shopping next week for the rest of the items.”

The tone in her voice caused sweat to start running down my forehead into my eyes.  “Alright, dear, I am sorry I upset you.  I know you are not feeling well.” I dabbed my forehead with my sleeve.  “I’ll be home in fifteen or twenty minutes.”

A calmer voice responded, “That’s great, honey.  I’ll see you shortly.  Drive safely.” 

For about a minute, I stood there staring at the cart full of food.  I considered keeping one box of meatballs because they were so good, but then thought the better of it.  Unfortunately, it took me longer than I thought to return the items.  For some reason I felt the need to apologize to each of the women giving out the samples.  When I arrived at ‘checkout’, the lines were ridiculously long.  Thirty minutes later I had finally paid and was ready to leave.  I glanced at my watch and groaned because I knew Jenny would wonder why I was not home yet.

It was on the way to the exit that I saw it.  I could not believe my eyes.  I stopped in front of the display and my heart began to race.  It was the most beautiful thing I have ever seen.  After several moments of just sitting there drooling, I pulled out my cell phone and dialed Jenny.

“Hello.”

“Jenny, you would not believe what they have on sale.  It is a Panasonic 60” high-definition television with the capability of simultaneously viewing two ball games at …” 

“FRANK!”

There it goes, rearing its ugly head again

Copyright 2010 - Bruce Gaughran
Rev. 08/24/2013

Our family is very competitive. One-upmanship ranks high in our priorities. 

Being the ninth child to attend the same schools in a small Midwestern town, I felt my siblings had already accomplished or excelled at everything. Two siblings were straight 'A' students and two brothers excelled in sports. I even had a brother who dropped-out of school. So, after reviewing the opportunities, I did what every red-blooded, self-doubting teenager would do. I slid through six years of my life without excelling at anything.

When I was a senior, my oldest brother asked me where I planned to attend college. When I commented that I wasn’t certain I wanted to go to college, he told me that I would never amount to anything without a college education.  I know he was being supportive, but at the time, it was the wrong message. He had no idea how powerful his comment was and how it would rule my life.  

I did attend junior college and found myself just sliding by again.  It seemed like every time something negative happened, self-doubt would rear its ugly head and I would say, “Here we go again.”  

I married my high school sweetheart who also lived with self-doubts in her life.  We probably felt that we could help each other through this world of blame, doubt, and emotional fear.  It just did not happen.  Two self-doubting people do not make a happy couple or a positive relationship.  The marriage eventually failed.

After one year of college and since I had no interest in improving my academics, I joined the Navy.  It seemed like the right thing to do at the time. Driven by my brother’s words and wanting to prove him wrong, I excelled in the service. His words became my motivational mantra. 

After my discharge, I went back to college in hopes of “amounting to something.”  Yet, when things were not going well, the negative voices in my head increased and the anchor of doubt started pulling me under. In the end, I dropped out of school again. 

Sometime in my late twenties, I discovered that I had the ability to develop winning organizations that could improve the bottom line of a company. Other people recognized this attribute and were willing to pay me well for my abilities. Success breeds opportunities and I found myself on the rise in the corporate world.  No matter what I tackled, I did it well. Presidents of corporations called wanting me to join their teams. Promotions and new opportunities came regularly. Whatever the challenge, I embraced it and thrived. 

But those voices still would not go away. Whenever I filled out an application, where it asked for my education, I paused because the claws of self-doubt ripped away at my confidence. No matter how successful I was or how much money I made, the voices always tried to tear me down and take away any joy in my life.

During all of this, I just happened to meet the most thoughtful and supportive person in the world. Fortunately, she married me. Every time self-doubt reared its ugly head, she would be there for me.

Fast forward fifteen years … I am an executive with a Fortune 100 company. My career with them started as a general manager of a trucking subsidiary and after several promotions I am a vice president in a billion dollar division. I have a proven track record. I make an excellent salary with bonuses and stock options. I hire MBAs to work for me. Other companies are courting me. Life is good and the voices are only an occasional whisper in the back of my head.

When a member of our company’s senior management team calls asking if I am interested in the top position in Logistics for the company, I cannot believe it. The person would be responsible for merging all transportation operations as well as all warehouses around the world. The department’s operating budget alone would be close to a billion dollars. It was an opportunity of a lifetime.

What is the first thought that crosses my mind? You guessed it; I do not have a college education. Self-doubt rears its ugly head once again. No matter how well I did and how successful everyone thinks I am; those voices will not stay buried for long. I knew that the person calling had reviewed my personnel file and already was aware that I did not have a college degree. This lack of education must not have been a showstopper to him. Yet, the “800 pound gorilla” crawled up my back and tried to drag me down again. Talk about letting the air out of my balloon.

Today, I view my brother’s advice as a wake-up call when I needed one. At the time, I glided along without any real motivation in life. Even though his words were initially a crutch, when coupled with my competitive spirit, the two became the driving force that propelled me forward to prove that I could succeed in this world. 

I now understand success is measured over a person’s lifetime and there is much more to life than a career. My focus is on the love of my family and friends, as well as my financial, emotional and spiritual stability. And, I am finally content.

For What Is A Man? - Part II

Copyright 2007 - Bruce Gaughran

His Seventh Son …

The definitions below will mean more after you finish reading the story.

-          Man:  (Noun) An adult male person who has a manly character (virile, courageous, competent)

-          Manly:  (Noun) Possessing qualities befitting a man

-          Emasculated:  (Verb) Deprived of strength or vigor

I have Kennedy’s Disease.  It is an X-linked, adult onset, progressive muscle disorder.  I often refer to it as the poor man’s version of ALS.  Kennedy’s Disease does not show up until later in life and it gradually erodes your strength by killing off the muscles and motor neurons in your body.  Doctors classify it as rare disorder and estimate that 1-in-40,000 men have it.  There is no treatment or cure for the disease.  Living with the disease reminds me of the paradigm, “Is it more difficult to face life being blind from birth or to lose your sight later in life?”  I realize that neither are good options, but is one worse than the other?  Is it more difficult to lose something that you had or never to have experienced it in the first place?  Realistically, what does it matter?  You are still blind ... or, in my case, physically handicapped.

Many people have asked why Kennedy’s Disease is called a “disease” when it is actually a defect in our DNA.  When I looked up the word “disease” in the dictionary, it provided a clearer understanding.  A disease is “an impairment of health or a condition of abnormal functioning.”  Well, that explanation does fit pretty well.  Kennedy’s Disease is a condition of abnormal functioning of the androgen receptors that fire the motor neurons.  I still like the scientific name of Spinal Bulbar Muscular Atrophy.  Now that is descriptive and it does not sound like something contagious.  Does my being bothered by the word “disease” just show an increased level of frustration?  Why should it matter what it is called?  All I know is that I am still a “man,” but I no longer feel manly.  I feel emasculated because something was stolen from me that I prize.

Kennedy’s Disease takes its toll on people mentally and emotionally as well as physically.  Everyone tends to focus on the physical manifestations of the disease and not much is said about the psychological aspects of it.  In some respects, the psychological aspects of the disease are far worse than the physical.  As the muscle groups weaken, and basic movements become more difficult, thoughts and feelings also begin to deteriorate.  Acceptance is often the most difficult aspect of Kennedy’s Disease.  Acceptance is a hard pill to swallow.  Even more difficult is admitting to others that you have the disease.  It took me years just to tell my family and friends.  It took even longer to admit it to my supervisor at work and co-workers.  The last thing I wanted was to be considered physically handicapped … someone that could not do his job.  I did not want people looking at me as different or considering me less than a “man.” 

In my thirties, I occasionally tripped or stumbled when walking on uneven ground.  I brushed these incidences off as me not watching were I was walking.  More doubts began to surface as other symptoms began to show up.  By the time I was in my mid-forties, I realized that I could no longer do certain things that I enjoyed.  One such activity was hiking in the mountains with my wife.  We loved being together surrounded by nature.  We often hiked several times a month.  Going uphill was difficult as my muscles weakened, but it was going downhill that became dangerous.  My quads could no longer hold my weight.  The longer I hiked, the weaker the leg muscles became.  I fell many times in those years.  Fortunately, my injuries were relatively minor and I always managed to get up and finish the hike. 

Gradually, I had to give up more activities that I enjoyed.  Racquetball and tennis were two sports that I was good at and I enjoyed playing.  Eventually, I just could not safely play either of them.  Then, in my mid-fifties and after several falls and a few broken bones, I realized that even stairs were out of the question.  I now needed an elevator if a customer, warehouse, or mill had offices on the second floor.  A few years later, just walking with co-workers or customers became a burden because I could not keep up with them.  At first, I just gave some excuse and tried to bow out gracefully ... bad knee, recovering from an injury, etc.  Eventually, I had to tell the truth and just say, "I sorry, I can't do it."  Every time I said, "I can't," I thought of my father telling me that "can't never could do nothing."

Even more frustrating was the change required as a grandparent.  How does one explain to your grandchildren that you cannot pick them up, play with them on the floor, or walk to the park to play with them on the swing set or slide?  Children are extremely accepting, but they do not really grasp the reasons why.  Fortunately, reading to them was one of the activities that I could still do and they both enjoyed the bedside stories.

The loss of independence is very difficult to accept.  A couple of years ago I realized that I could no longer just hop in the car and go somewhere.  Every trip became a logistical consideration.  Are there steps or curbs that have to be navigated?  Is the rest room handicap accessible?  What is the weather forecast?  Is the walkway paved, rock, or dirt?  The list of questions continues to grow as the disease progresses and my negative experiences increase.

For over thirty years, I just took my body for granted.  I just assumed that when I needed to walk, run, lift, climb, or whatever, the appropriate muscles would just respond accordingly.  It did not take any thought; the muscles just knew what to do.  There was always synergy between my central nervous system, motor neurons, and muscles.  As the disease progressed, however, I found that I needed to tell, or perhaps even will, certain muscles to function correctly.  Unfortunately, even that does not always work today. 

Several of the muscle groups are no longer strong enough to perform the necessary task.  I find myself having to compensate, or perhaps even cheat, in order to perform basic movements like standing up from a chair.  Additionally, because some of the signals no longer reach the appropriate muscles at the correct time, certain muscles will fire at the incorrect time.  This causes muscle spasms or twitching that are often noticeable to others.  Even stranger is when a motor neuron sends a signal to a muscle to perform a task that is already completed.  One example that has happened several times is when I hold a glass of water.  Occasionally, the wrist will just turn over as if I am performing the drinking motion function.  This happened several times at business dinners while I walked around visiting with people.  I could be just talking to someone when the wrist just turns inward and dumps the contents of the glass on the floor or on my shoes.  It is embarrassing and difficult to explain.

Observing the gradual loss of the use of my hands and legs is almost unbearable at times.  I often try to do too much and occasionally end up hurting myself.  Yet, I cling to that hope that through some divine intervention, I will be able to do something today that I could not do yesterday.  Call it stubbornness or denial; it exists because I still have hope.  I repeatedly need to prove to myself that I can no longer do something as simple as walking or bathing.  Loved ones cannot seem to understand why I still want to try something one more time even though I have failed several times before.  I am just not willing to accept the inability to perform these simple tasks.  Will I ever just give up?  No way, because “Can’t never could do nothing.”

Over the last ten years, the disease has also taken its toll on my face and throat muscles ... those muscles controlled by the bulbar region of the brain.  Initially, I started choking while I was sleeping.  In the middle of the night, I woke up gasping for air and could not clear my air passageway.  Talk about something frightening for my wife.  A few years later I found it more difficult to swallow certain foods.  If I am not focused on chewing and swallowing, food will lodge in my throat.  In recent years, my jaw muscles have weakened to a point where they cannot always hold the lower jaw in place.  If I eat a bagel, for example, the pressure caused by chewing on something hard forces the lower jaw to pop out of joint.  The initial pain is not too bad, but for the next several days I have to eat with my hand pushing on the lower jaw to keep it in the socket.  Occasionally during the night the lower jaw will just fall out of its socket.  Meanwhile, the facial muscles continue to weaken and collapse. 

Over the years, I have fell dozens of times.  Almost all of my falls in the earlier years were forward as if I stumbled.  Fortunately, only a few of those falls were serious.  About six years ago, however, I was stepping into the house from the garage when my knees collapsed.  I fell backwards, cracked my head on the concrete floor, and went out like a light.  I suffered a concussion and had some bleeding on the brain.  Fortunately, the only long-term damage was to lose a portion of my sense of smell.  Then two years ago, my left knee buckled twice in three months.  Both times I went straight down with all my weight collapsing on the left knee joint and lower leg.  The first fall fractured the left fibula and ankle.  Within a few weeks of receiving a clean bill of health, my left knee buckled again.  This time the left fibula and tibia (the weight-bearing bone) fractured.  The doctor told me I could not place any weight on my left leg for three months.  For a person with normal leg strength, the healing process would be difficult.  For someone with Kennedy’s Disease, whose leg strength is not half of what it should be, the three months of inactivity was an eternity.  I have never had a worse experience. 

Not only was it difficult for me, it was even more difficult for my wife.  She had to be there for me every day.  The only time I could leave the house during that time was in a para-transit vehicle specifically designed for a wheelchair.  During one of my doctor visits, he showed me the x-ray of my left leg and foot.  My bones looked like Swiss cheese.  He said I had severe osteoporosis and another fall could crush the bones.  I made the decision that day to give up walking and begin using a wheelchair.  It was a difficult decision, but I could not put my wife through another six months of hell like this again.

Pain ... what can anyone really say about pain?  What is pain to one person is only an ache to another.  I had to learn early on to live with the aches and pains associated with the disease.  When I was in my twenties and thirties, I experienced severe muscle cramps in both legs.  Many nights I woke up with a painful cramp and had to massage the muscle until the pain subsided.  In the forties, the cramping miraculously disappeared.  However, it was replaced with deep muscle aches.  This usually happened when I exceeded my limitations for the day.  At the same time, I begin to experience extreme fatigue.  It often took a day or two to recover.  In recent years, I am learning to live with muscle aches almost every day.  In addition, several days a month I wake up with deep aching pain in specific muscles.  It is almost as if I can feel the muscles dying.  Fortunately, I must have inherited my father’s tolerance for pain because I can normally live with the nagging aches and pains.  Occasionally, when the pain is too intense and I cannot sleep, I have to take an Ibuprofen. 

Along with the aches and pain, my body now reacts negatively to cold temperatures.  Anytime the temperature is below 50 degrees, I lose the use of my hands.  Sometimes even gloves do not help.  My legs and feet are also constantly cold and do not always function properly.  I wear insulated underwear, thermal socks, and gloves from November through March.  Occasionally, I have to wear gloves in the house just so my hands can function better.  I have also lost most of the feeling in my feet and some of the feeling in my hands.  I do not always notice hot and cold or cuts and scrapes.  I have burned my fingers and not known it until I saw the blister.

As the inability to perform basic and often simple tasks increase, frustration and anger often become side effects of my fight to remain independent, mobile, helpful, and a “man” in my own eyes.  Resignation, especially at first, was something unheard of.  Meanwhile, since there is no treatment available, the wasting away continues. 

As my muscles weaken further, so does my self-esteem.  I begin to wonder if I am more of a burden then a blessing to my wife.  My perceived manhood ... what is important to my belief system ... is now being challenged every day.  Instead of being the protector of the family, my wife is now trying to protect me.  A few years ago, another challenge showed up and this one is even more difficult to handle.  It is not bad enough that the disease has robbed me of my strength; it now has taken away my libido.  And, just like everything else with this disease, it slowly takes away those special moments of intimacy that I once shared with my wife.  It is impossible to walk hand-in-hand with my wife on the beach or to sit on the couch together.  It is difficult to give a good hug or hold and comfort my wife from a wheelchair.  It is even more difficult to kiss, snuggle, and caress my wife in bed when I cannot hold my head up for more than a few moments and it is difficult just to roll over.  Rolling over in bed is something similar to watching a beached whale trying to free itself ... plenty of action, but very little movement.  Talk about romantic.

Everything that was important to me is slowly disappearing from my life.  Every emotion and belief is being challenged.  I find myself asking, “Can I bear my soul and my pain and still be considered a man?”  As I feel more isolated from the world around me, I begin to wonder what my wife really thinks of me.  I know she still loves me, but can she continue to love me as I become even more of a burden.  Or, will she just end up taking care of me out of some sense of responsibility … the “in sickness and in health” portion of the vows?  At other times, I become frustrated because I feel that I am no longer needed.  If I am not the breadwinner, the lover, or “the man of the house,” then what am I? 

As a parent, I never wanted to do anything that might harm my children.  Today, and every day, I live with the guilt that I passed the defective “X” chromosome on to my daughter.  In addition, there is a chance that the defective gene was also passed to my grandchildren.  Hoping for a treatment or cure, whether medical or miracle, is what I live for today.  In desperation, I look for alternatives with a willingness to try almost anything that might help bring about a slowing or remission of the disease.  I am looking for anything that might help my daughter and her children.

Living with the disease is often just as difficult for caregivers, family, and friends.  Yes, I need support through times like these, but unfortunately, I often look upon it as “mothering” or even “smothering.”  The primary care-giver is occasionally the unintentional beneficiary of my anger and frustrations.  I do not mean to lash out, but sometimes I just need to vent and she is often just the person who happens to be in the wrong place at the wrong time.  I realize there is no excuse for my anger, but I just lose control.  Afterwards, I feel guilty for hurting her.  I know she never signed up for this when she married me, but for some reason she continues to put up with it.  As the outbursts continue, the guilt that follows leads to even greater frustrations because I am hurting the one that I love so much.  At times like this, it seems I am caught up in a vicious never-ending cycle of self-destruction.

Someone once said that everyone is afraid to die.  In my case, I am not so certain that is true.  I have been exposed to many dangers in my life including several life-threatening moments in Vietnam.  Death never seems to concern or consume my thoughts.  I believe I can deal with the prospect of death, but find that the future unknown of living with this disease is much more frightening and much more difficult to face. 

Recently I was watching “Saturday Night Lights.”  The high school football team was down ‘26’ to ‘0’ at the end of the first half.  The coach ended his halftime pep talk to his players with the following.  “Every man at some point in his life is going to lose a battle.  He is going to fight and he is going to lose.  What makes him a man is that in the midst of the battle he does not lose himself.”  For me, this battle is not over, but I need to find my ‘Self’ once again.

For What Is A Man? – Part I

Copyright 2007 - Bruce Gaughran

I was raised in a family of ten children.  I was the seventh son and the second to the youngest child.  My father loved his daughters and was proud of his sons.  There is a twenty-three year spread between the oldest and the youngest.  My father was in his early 70’s before the last child moved out of the house.  My father was the breadwinner.  He always found a way to keep food on the table and a roof over our heads.  He was a mechanic by trade and could fix almost anything.  He worked hard ... usually twelve hours a day, six days a week.

Physically, he was very strong even though he was not a large man.  He had tremendous arm strength because he spent a good deal of time in a pit working on engines above his head.  When he was not working, he always found time to tend to the garden, help someone that needed his or her car repaired or a project completed, or visit someone who needed to talk to a friend. 

My father believed in God and hardly ever missed a Sunday church service.  He also believed in the power of prayer.  Many a Sunday afternoon he would spend visiting the sick or shut-ins.  I remember seeing him several times on his knees praying beside a person’s bed in the hospital or in their home.  When a neighbor was dying of lung cancer, my father visited him regularly.  He took me along to mow the lawn and perform some yard work.  I remember seeing my father run out of the neighbor’s house several times and throw-up because the stench of death was so strong.  Afterwards he cleaned himself up and went back inside.  He never complained once and kept on visiting until the man passed away.

While I was growing up, my father regularly used the term, “be a man,” which I interpreted to mean swallow the medicine and get on with life.  Excuses were for the weak.  A man always delivered on his promises and kept his commitments.  My father raised his boys with many values including that “a man” is responsible for his actions.  Several times, he told me never to do anything to embarrass the family name.  He also warned me that if the police ever arrested me for anything, he should be the last person I call.  Furthermore, if my name should ever appear in the paper because I did something wrong, I need not come home.  One thing I knew for certain is that he meant it.

My father was a strong disciplinarian.  As children, he expected us to attend church every Sunday.  He required us to sit in the front pew and misbehaving was not an option.  If you did something wrong, punishment was immediate and always heavy-handed.  He never gave you a chance to explain your side of the story.  Wrong was wrong, no matter what the reason.  There was one benefit to this style of discipline.  Once you were punished, he never brought up your actions or indiscretions again.  It was over with and forgotten.    

My father lived through the Great Depression.  Even into his 60’s and 70’s thoughts of the Depression left a sour taste in his mouth.  I believe that is why he always encouraged his children to work hard and save money for a rainy day.  He constantly encouraged me to find part-time work.  I was stocking shelves at a grocery store and delivering papers when I was ten.  When I turned twelve, my father asked if I wanted a job sweeping out buses at the bus barn.  Six days a week, I would go to the bus barn around six in the evening.  I received 10¢ a bus “if” I did a good job.  There was one rule, however, that I found difficult to accept.  Any money found in the bus had to be given to my father.  He placed the money in the “Lost and Found” drawer.  If no one called and claimed it and I still remembered the money was in the drawer after sixty days, the money was mine.  I remember finding a $5.00 bill once.  I was so excited because it was a lot of money in those days.  Every day for two months I would ask my father if anyone had claimed the money yet.  At the time, I really felt his rule was unfair because “finder’s keepers, loser’s weepers” should apply to something like this.  Later in life I realized that this was just a reflection of the kind of man my father was.  He was honest and there was no gray area surrounding that honesty.

He also did not believe in giving his children an allowance.  He felt he did not need to pay us for helping out around the house.  Mowing the lawn, shoveling the sidewalks, and performing other chores was our job.   

My father only had a seventh grade education.  He quit school when his father died to help his mother pay the bills and keep food on the table.  Even though my father valued a person’s education and wanted all his children to go to college, he always said that “street smarts” and common sense were also important.  He never asked what our grades were or whether we were doing your homework.  He always felt that since this was one of our jobs, we should do it and do it well.      

One of his favorite expressions was, “you’ll learn.”  This was always his response when I expressed my radical teenage opinion about something going on in the world.  It meant that I was wrong and that someday I would realize it.  Another favorite expression that went along with, “you’ll learn,” was, “what goes around comes around.”  This I took to mean that history repeats itself.  As a young know-it-all teenager, I could not imagine my father could tell me anything I did not already know.  Well, as I matured, I learned I was dead wrong and more often than not, he was right. 

Then there was my father’s expression; "can't never could do nothing."  He never wanted to hear me say, “I can’t.”  It was just unacceptable to give up.  I took that one to heart in the wrong way and those words should have gotten me killed several times as a youth.  I never turned down a dare even when I knew that it was dangerous.  I considered the challenges a part of the growing up process ... a sort of rite of passage into manhood.  I never used any common sense when dared to do something.  I am sure my guardian angel kept busy during those years.  Yet, my father’s words helped take me pretty far in life.  I might not have been the strongest, the fastest, or the smartest, but I always made it to the finish line often ahead of many who were smarter, faster, and stronger.  Giving up was not an option.

My father had a heart attack in his early sixties and could not work for a year.  Being a teenager at the time, I was not prepared to see this icon of a man crumble emotionally after being confined to the house for months on end.  I could not understand how someone so strong and confident could retract into a shell and spend endless hours every day sitting in his favorite rocker watching television.  This from a man who normally only watched Lawrence Welk and Friday Night at the Fights.  He was just not the same man.  Then I found out that while he was recuperating he lost his business because one of his partners embezzled funds and did not pay the company’s bills.  For days on end, I remember my father calling creditors and telling them that he would repay every cent that the company owed once he could go back to work.  One thing about my father, once he gave his word, he would not go back on it.  A man was only as good as his word.

Since my father had lost his business, he no longer had to work six or seven days a week.  I was in the Boy Scouts at the time and, because I was a typical teenager, I was considering dropping out of the Scouts.  I was worried about my image with my school friends.  For some reason, my father joined our church’s Boy Scout troop and starting taking me to the meetings every Monday.  He also started going on the camping trips.  With his newfound interest and involvement, I stayed in Scouting and became an Eagle Scout, was a member of the Order of the Arrow, and received the God and Country Award, the highest church award in Scouting.  My church project was to build bike racks for the Sunday and Bible School classes.  My father taught me how to cut, bend, and weld iron rod.  It was a wonderful experience because we were doing something important together.  He remained in scouting and several years later the district council gave honored him with the Silver Scout Award.

My father was a man of few words.  He did not have a lot of time for conversation.  If he said something, he did not expect to have a discussion on the subject.  His word was the gospel.  When I first started dating, my mother must have told my father to have one of those ‘birds and bees’ talks with me.  He showed up at my bedroom door one evening and asked if we could talk.  I was immediately suspicious what “talk” meant since we never just talked.  He sat down on the bed and asked if I liked this girl I was currently dating.  After I said yes, he stood up, pointed at me, and said, “Well then, keep your pants zipped up.”  He then walked out of my room without saying another word.

Another example of how well we communicated took place the summer of my senior year in school.  I won the local tennis tournament and was given the opportunity to represent our city at the state championships at the University of Minnesota.  That evening over dinner, I related my experiences on the court that day and showed off my first-place trophy.  The next morning my father came to me and mentioned he was planning to take off a day of work next week to drive me to the state tournament.  I was shocked, but also honored.  My father never took off work for anything.  I could not have been more proud the day of my first match knowing that my father was sitting in the stands watching me play.  I won the first two sets easily and then my game fell apart.  I began to make poor shots and double-faulted several serves.  Normally I could talk myself out of a slump, but this day I found myself looking repeatedly into the stands and wondering what my father was thinking.  The more I looked, the more mistakes I made and the more frustrated I became.  I was in a death spiral.  I lost the match three sets to two.  I was crushed; not so much because I lost, but because my father had never came to watch me play before, and the day he did, I lost.  The two-hour drive home was the longest in my life.  Neither one of us spoke the entire trip nor did we ever speak of that day again.  I was too embarrassed to bring it up. 

Because my father worked so hard, he never had time to take me hunting or fishing.  I would go hunting with friends and occasionally with their fathers.  When I did bring home a pheasant, duck, or squirrel, dad always seemed to criticize me for wasting a shotgun shell or for tearing up something so small.  One Saturday he came home from work early and asked if I would like to go out for some target practice.  We went to the local dump.  Dad placed several soda cans on the ground 30-50 feet in front of me and asked me to shoot them.  I carefully aimed and hit most of them.  He then took the .22 rifle and danced a coke can down the path.  Shot after shot hit the can even though he hardly took any time to aim.  I could not believe how good he was.  He then had me throw cans into the air and he would shoot them before falling to the ground.  On the way home, I asked where he learned to shoot so well.  He explained that when he was a boy, he could not afford shotgun shells.  If you expected hit a South Dakota jackrabbit with a .22, you had better be a pretty darn good shot. 

Until I was in my early twenties, I never realized that my father had any other hidden talents.  When I was in high school, anytime I mentioned I wanted to go downtown to shoot some pool, he would tell me he did not want me hanging out with those hooligans.  After I returned from Vietnam, my older brother, Dick, and I talked my father into going out for the evening.  Somehow, we ended up at a pool hall.  When we first walked in, I began to explain what the game was all about and he gave me the strangest look.  When I recommended that we play a little Eight Ball to start, he walked over to the snooker table and said this would be a better game.  I commented that snooker required greater skill to play because the pockets were smaller.  He looked at me and just smiled.  So, we played snooker.  Soon, he was putting balls away left and right and he beat both Dick and me handily.  He then wanted to play billiards and this time I kept my mouth shut.  He once again amazed us by calling and then making two, three, and four rail banks and kisses.  Dick and I just kept shaking our heads not believing that he could make these shots and use “English” to position the cue ball where he needed it for the next shot.  Again, he beat both of us easily.  While we played, my father hardly said a word.  He just methodically went about his business and he really seemed to be enjoying himself.  When we were through, he commented that he was a little rusty since he had not picked up a cue for close to forty years.  He also mentioned that the equipment and tables were far superior to those he played on in the 1920’s.

I left the pool hall that evening wondering if I ever really knew my father.  On the way home, I asked why he was always against me playing pool.  He explained that when he was a young man, he owned a pool hall.  He said he saw several young men in those days who thought they were good enough to drop out of school and make a living shooting pool.  He did not want me ending up like them … no job, no education, and no family.

I never saw my father cry while I was growing up.  For that reason, I just assumed that a man does not cry.  On the day I was leaving for Vietnam, he hugged me at the airport, told me to keep my head down over there, and to write my mother at least once a week.  Then I noticed his eyes began to tear up.  He did not turn away from me and I could tell he was not embarrassed.  He just continued to make eye contact.  Then, he hugged me one more time, wished me a safe trip, and walked away.  Talk about an eye-opening moment for a nineteen-year-old.  It is also a day I will never forget.  Could it be that I never really knew my father at all?

In my father’s later years, my adult years, I was amazed at how affectionate he was.  He would hold anyone’s hand, give great hugs, and always have a smile and kind words for anyone ... family, friend, or a person in need.  No one was a stranger to my father.  A stranger was just a friend he had not met yet.  He enjoyed living life to the fullest and he never missed an opportunity to laugh or to cry.  He loved to visit his family and you could find him spending hours playing games with his grandchildren.  When he came to visit me in California, he brought his tools along and a tool belt for my five-year-old son.  As my father walked through the house looking for projects to work on, he had my son walk beside him and hand him the tool he needed to perform the repair.  My son beamed with pride because he was “grandpa’s little helper.”     

One early fall visit, my father and I were working on his car out in the driveway.  I noticed that every twenty minutes or so he would take a pill from his pocket and swallow it.  I asked him what they were and he said glycerin tablets for his heart.  He explained that the doctor told him to take them whenever he had significant chest pain.  I asked him if he was okay and he brushed off the question by stating that he was just getting old and his ‘ticker’ was wearing out.  My last evening in town, my father came downstairs to wish me good night.  Something about his demeanor told me that this was more than a casual visit.

We chatted for some time, but I noticed that at least twice he began a sentence by saying something like, “Just in case we don’t see each other again.”  After the second time, I chuckled and told him that I would see him again at Christmas.  He shook his head and said that he would not be around then and that this was our last chance to say goodbye.  Tears swelled up in my eyes.  I could not believe what he was saying.  I told him he would live to be 100.  Again, he shook his head and this time I noticed he was also teary-eyed.  He told me how proud he was of me ... something he never really expressed before.  I started to cry and told him how much I loved him.  We then really talked about my family and life in general.  He shared so much with me, things that we had never talked about before yet were important to both him and me.  I did not want the evening to end.  My heart ached, but also I felt this moment was a real breakthrough for the two of us.  We shared our innermost thoughts and feelings without embarrassment or fear.  We were both men with opinions and perceptions, yet still father and son.  Then, before leaving, he shared a little fatherly advice.  Something that I never realized had troubled him until that evening.  After one more good cry, we hugged and he walked out of the door.

As the door closed, a hollowness came over me.  I wanted to run after him ... to ask him to come back and talk some more, but something else held me back.  I knew that we had our moment ... one that could never be shared or replicated.  That was the last time I saw him.  Less than two months later, my father, who was 79 years old, died at work.  His boss reported that he just slid off the bench while having a cup of coffee.  I felt he died with his boots on ... just the way he would have wanted it. 

I love my father and I am honored to be one of his sons.

So, what is a “man?” 

·         Is he the strong, hard-working breadwinner or the person who humbles himself in a hospital room by kneeling beside a bed praying for someone to be healed? 

·         On the other hand, is he the fun-loving, pool playing, weekend hunter who goes out every Friday night with his pals or the father who cries at the airport when his son departs for Vietnam?    

More importantly, how will the “man” be remembered?  I am certain that anyone who knew my father will remember him because he was a kind, loving, supportive husband, father, grandfather, co-worker, and friend.

Did Anyone See That?

Copyright 2009 - Bruce Gaughran

Inadequate is how I feel when something needs to be done around the house these days. Unfortunately, most everything that needs to be repaired requires someone else to do it. It 'smarts' every time something breaks or needs repair and my wife comments that she wished our nephew lived a little closer (our nephew is the handyman of the family). I also realize it is just my ego being bruised, but it still bugs me. For years, I would 'try' to perform the repair, and several times, I ended up hurt or could have been hurt because my ego blocked all common sense.  To give you an idea of what I mean, this happened a few years ago while we still lived in Pennsylvania.

A raccoon broke the wire between two trees that held a bird feeder in the backyard. Not wanting to bother my wife that morning, I grabbed the twenty-five foot extension ladder from the garage, walked to the back of the yard, leaned it up against the big oak tree, and extended the ladder another six feet up the tree. For some reason I believed that because I could still climb steps with the help of handrails, I should be able to climb a ladder.

After securing the wire to my belt loop, I stepped up to the first rung without a problem. The second rung, however, was a little more difficult and should have been a sign. By the third rung, my thighs just would not pull me up. So, figuring that I only needed to go up another five or six rungs, I pushed my butt out (away) from the ladder and used my thighs to push out as much as up as I worked my way up several more rungs. My feet were probably eight to ten feet off the ground by now, I was sweating, and my leg muscles were shaking as much as the ladder. Did that deter me?  No way.  I figured that if I went up one more rung, I could do the job. Since my center of gravity was no longer against the ladder, all of a sudden I noticed that I was going airborne. I reached for a branch (and missed) as the ladder lifted itself away from the tree and I began to falling backwards in a slow downward arch. It is a somewhat terrifying feeling sailing through the air knowing that you are going to hit the ground hard.

If this had happened in my younger years, I would have just jumped off the ladder and rolled. In this case, however, there was no jumping involved. I just hung on for dear life and wondered if any of the neighbors were watching as I plummeted towards the earth. I find it strange that in almost every fall or accident I have had like this, I am more worried about whether someone is seeing me do something stupid than if I am going to be hurt.

Anyway, back to the story. I ride the ladder to the ground (once again proving Newton was right about gravity). WHOMP!  I land on my back still holding onto the ladder. After I catch my breath, I begin to test all of my limbs. When I realized nothing was broken, I extricated myself from the ladder, picked myself up, brushed myself off, and then looked sheepishly to the left and right making certain no one saw my latest aerial stunt.

Realizing that I just got off lucky again, I looked up towards the sky and gave a short prayer of thanks (probably the sixteenth that week). Then I picked up the ladder and took it back to the garage. Once inside the house, I casually mentioned to my wife that when she has some time, "we" (she loves the word 'we' because it means 'she') need to fix the bird feeder sometime today.

Unresolved Issues

Copyright 2004 - Bruce Gaughran
Rev. 3 - October 2011

Shane’s stomach growls.  It was 7:00 PM and the aroma of supper was missing from the air again this evening.  As he walks into the kitchen, he sees Sarah sitting at the table knitting.  He looks around and doesn’t see anything cooking.  “What’s for supper, Sweets?”

Sarah has been waiting for this moment; without looking up she responds, “Whatever you fix is fine with me.”

Sarah’s comment is the last thing Shane wanted to hear.  As far as he knew, he had not done anything to upset her recently.  She was post-menopausal, so that shouldn’t be an issue.  She normally doesn’t have wild mood swings, so it can’t be depression or anything like that.  Frustrated with the whole situation, he snaps back in anger – probably a more harsh than he wants, “This is the third night in a row you haven’t made supper, Sarah.  What the hell am I being punished for this time?  Or, is it just that you don’t cook anymore?”

Sarah places her yarn and needles on the table and looks up.  Even though her insides churned, she attempts to look calm and comfortable.  “Shane, I didn’t mind waiting on you hand and foot while you were working the last forty years, but you are retired now.  It is about time you took a little responsibility around the house.”

Shane feels the heat build up in his face and knows he is turning crimson red.  For a moment, he just stands there speechless, but his anger and frustration are too great to ignore.  “Sarah, I have just about had enough of this crap!  Either you make dinner right now or I am going out to eat.”

Sarah, knowing her husband’s every move, has anticipated his response.  She smiles, rises from the table, and as she walks towards the door she remarks, “That sounds great, Honey.  Where are we going?”

“WE,” Shane emphasizes, “are not going anywhere.  I am going out by myself.  A beer and a ‘brat’ sound awful good to me right about now.”

Sarah stops.  “Oh, all right then, would you mind bringing me home something?  Between the laundry, house cleaning and paying the bills today, I haven’t had a chance to eat anything since breakfast.” 

Shane thinks he can hear little sniffling noises.  He shakes his head as his anger begins to melt away.  “There you go again.  Every time we try to have a decent discussion about something, you end up crying.  You know we can’t get anything resolved when you get like this.”  He walks over to her and wraps his arms around her.  “Come on, Sweets, let’s go get something to eat.  How about I take you to that Mexican restaurant you like so much?”

Sarah turns into him and places her head on his chest.  She knows she mustn't retreat now.    She wipes her nose and eyes with a tissue.  “You know, Hon, this doesn’t solve our problem.  I still don’t believe I should have to cook for you every day as well as do all the chores now that you are retired.”

“Sarah, I just don’t understand this change in you.  We were so happy before I retired.  What happened?”

“We both have changed, Honey.  We’re both getting older and I need some help around the house.  I just can’t keep up with everything like I used to.”

Shrugging his shoulder in defeat and acceptance, he smiles sheepishly, “Okay, I still don’t understand the cooking issue, but I agree we need to talk this through.  Perhaps I can help out with some of the chores.  But, can’t we just go out for a nice peaceful dinner first?  I’m hungry.”

Sarah hugs him a little tighter and looks up into his eyes, “Okay, as long as you agree to talk about it when we get home.”

Shane smiles in relief, “Agreed.”

As they head out the door, both know that the issue is far from being resolved.  This evening’s discussion will not be the last on the subject and won't be any easier the next time.