The Choice: A Story of Change and Acceptance. a Story of Love.

By Russell Coray

Enter into the life of Robert Murphy as he learns to battle with life changing issues. Since he styles himself as being a person that has successfully lived a life of serious struggles, when he decides to share his knowledge with other people, he is surprised to find that other peoples lives can be filled with challenges that far surpass his own difficulties. Follow Robert as he discovers that he still has a lot to learn to perfect the ability to help other people make choices that he thinks will lead them to happiness. Whatever life situation people have been dealt, Rob decides that happiness may be where it is found, but not necessarily where we are looking.

• Language: English
• Publisher: iUniverse
• Release date: Oct 16, 2012
• ISBN: 9781475955279

Russell Coray

Russell Coray has lived with the trials of MS for over 25 years. During this time, he has personally struggled to find his own happiness and has met many folks in Central Texas and across the world that battle with their own struggles. He has tried to live the principles of this book throughout his professional career and family life. He has 4 children, and has been married 21 years.

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Prologue

As I looked at the blue fluid that was about to enter my veins on that Tuesday morning, I couldn’t help but wonder if I had made the right choice. I was sitting comfortably in my easy chair at an oncology lab where I was surrounded by cancer patients. They were each receiving their own chemotherapy treatments, but none of them had a blue IV bag like me.

I had once lived what people had called a charmed life. Now I was living an undesirable life where I was trying to make the best of an undesirable situation. What had gone wrong? Why was this happening to me?

As the nurse approached me with a long needle to poke into a tender vein just under the skin of my arm, I was distracted by the television sets in the background—an airplane had just slammed into one of the towers at the World Trade Center. Unbelievable!

In spite of the World Trade Center tragedy beginning to unfold in front of my eyes, the nurse successfully found a vein in my arm, but my attention was drawn to the TV screens. What was happening? My personal life was definitely no longer a life that anyone would desire, but now an even bigger tragedy, a tragedy much bigger than myself was developing before me. As the blue fluid entered my body, my heart wrenched for the people that were attempting to escape from the tower.

A second plane smashed into the second tower. The mystery of why the first plane had collided with the first tower was quickly unveiling. Something evil was at work. Disconcertingly, even after my chemo infusion completed on that day, the evil had not yet been identified.

The evil paralleled the disease that the blue fluid was supposed to be combating within my own body. The evil disease was Multiple Sclerosis. The disease had been sporadically devouring parts of my body for more than the past 10 years, but recently, it had decided to increase the intensity at which it had been destroying me. The disease was simply a chronic illness, but it was still an incurable disease. Although the blue fluid was one of the most recent and advanced professional medical treatments known to combat the merciless disease, there was no hope offered to me that Novantrone would cure the illness. At best, the hope was that the mild chemotherapy treatment would slow the progression of the destroyer that had again decided to more aggressively impair my neurons.

What kind of choice had I made to allow doctors to inject my body with this unpredictable fluid? Was this really a choice that would make me happy?

PART ONE

Infusions

O ver the past month, have you had any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, strength, or other problems)?

Uhhh . . . no.

Do you have a medical condition that can weaken your immune system, such as HIV infection or AIDS?

No.

In the past month, have you taken any steroid medicines?

No, I don’t think so.

In the past month, have you taken any medicines to treat cancer or other illness, the medicines that might weaken your immune system?

Well, I’m taking this medicine, does that count?

Any medicines besides Tysabri in the past month.

No.

Good. Let me get started with your IV so that we can begin your infusion. Please sign this paper to confirm that you have read the warnings associated with this drug while I gather the stuff to get you started.

Rob sat quietly, scanning the documents that he was about to sign while the nurse gathered the needle and other medical instruments to begin the IV for the latest and greatest MS treatment since the troubling days of Novantrone. Today, Tysabri was about to enter his blood stream.

He had taken advantage of the table that had been positioned next to the plush, brown leather recliner in which he sat. He typically used the table to place some of his things during the infusion, personal items such as his lunch or a book. At times, he would use it to place his laptop to check emails or surf the net during his infusion.

It wasn’t really a table, but a small TV-tray type stand. There were a number of these stands in the room. Each one was located next to a different recliner where nurses could place their medical equipment while preparing an infusion for the patient sitting in the recliner. Each patient could place their belongings there while they received their infusion.

The prick of the needle had become so common in Rob’s life that after his experienced nurse returned, he was able to perceive that she seemed a bit nervous when she searched for a suitable vein in his arm.

She wanted to find just the right vein that she could insert a needle into for an IV, a vein that would not roll away from the needle as it bored through tender tissue beneath the skin, and a vein that would not break when she used it to transfer fluids from the IV bag into his body. On top of all those things, she didn’t want to miss the vein and be forced to poke him in the arm twice.

It had been almost 20 years since his MS diagnosis. During those 20 years, many different treatments had come and gone, but around the time of his initial diagnosis, there were not many generally accepted treatments available. At that time, doctors had only recently begun to treat MS with the first FDA approved disease modifying agent on the market, but that was it.

Since that time, other treatments had been approved to slow the progression of this devastating disease, but none seemed to be as effective for him as the treatment that he was about to receive.

In searching for available MS treatments, a person could currently find many holistic approaches as well as an increasing number of FDA approved approaches. Some of the treatments would work for some people, and those same treatments would not work for other people.

Some neurologists required an MS patient to fail with one FDA approved treatment prior to providing another treatment. Fortunately, it was uncommon for an MS patient to become dramatically worse due to a treatment; however, unfortunately, the patient could still become worse while receiving any one of the available treatments.

Rob was aware that in some cases certain combinations of treatments had been known to introduce side-effects that had been known to kill patients. Because of this, neurologists would proceed with caution when prescribing available treatments. Red flags would come up when a doctor would find that a patient was wanting to concurrently ingest certain holistic medications or receive another particular FDA approved treatment when the patient also expressed an interest in beginning a monthly Tysabri infusion regime.

The disease did not have a known cure. It was really anyone’s guess for treatment that would be best for a particular MS patient. This was often the typical approach to treating the illness. If one word were to be selected to describe how the disease affects a person, that is, what it means to be living with the disease and how to medicinally treat the disease, that word would have to be uncertainty.

Some patients would try to take comfort in this uncertainty by saying that the only certain thing about MS was the uncertainty of the disease. Initially, Rob thought the idea was ridiculous, but after battling MS for almost 20 years, Rob had actually found some reassurance in feeling like he had found a way to live with even the remotest degree of certainty.

The first two years after his diagnosis had seemed very much like the chronic illness in his body had not really been eating away at him. He had lived as though nothing was wrong with his body; ‘denial’ they called it in the medical world. Rob was not going to let this disease slow him down. However, in the second year, he learned that denial was probably not the best way to live with the disease.

In the second year, he began to reluctantly acknowledge that the disease he had been forced to live with was an illness that could potentially slow him down—a lot. He gradually lost the hope he had once carried; the hope that it was an ailment he could beat.

It was a disease that he knew very little about. He had never tried to learn about it before because he didn’t believe he really had to worry about it. However, once he accepted that he was ill, once he recovered from the frustration and anger that resulted from the unexpected hit that the disease had dished out, he decided to put forth a little more effort into learning about the disease.

He was able to accomplish this learning through a combination of his own efforts and with the help of other caring people.

He found that, depending on who you asked, MS (Multiple Sclerosis) was one of those diseases with the orphan label. Unlike cancer, there was not a huge number of people afflicted by the disease; about one person per 1,000 would get MS. One study reported that, worldwide, there was probably only about two and a half million people with the disease. However, that number could be a lot higher because the disease is quite difficult to diagnose.

Another unusual statistic of the disease that he found was that even though the odds of contracting MS increased if one of your parents or siblings had the disease, MS was not considered to be a hereditary disease. Women were more likely to get MS than men, but when a women was pregnant, her body was much better at fighting off the disease. The disease was rather nebulous.

Yet another unusual characteristic of the disease was the geographic nature of MS. The closer a person lived to the equator when they were young, the less the odds of their contracting MS. It was this statistic that encouraged Rob to move from Seattle to Central Texas. Although at the time he felt helpless and discouraged by his health, he hoped to give his children the greatest chance of avoiding the same health problems that he suffered.

His first few years of living in Texas had been good for him, but the years had not been a physical cure for him. It wasn’t until he began visiting the infusion center that his outlook on life had begun to change for the better. He had not been physically healed, but at the center he had found a spiritual medicine that he needed.

Returning to the present, at the infusion center that day, Rob had chosen to sit next to a person that he did not recognize, another patient with their IV infusion already flowing. The patient did not look real excited to be there, nor did he seem interested to talk. Although Rob wasn’t in the mood to enter a conversation either, over the years he had learned to put forth some effort into at least acting happy, even if he didn’t feel like it.

The nurse came back. She rubbed some alcohol onto his arm where a healthy looking vein could be seen beneath the skin. To help cover her slight insecurity about finding a suitable vein in his arm, without much hesitation, she inserted a long needle directly into his arm. Success! The needle found a vein almost immediately.

First try! Thank you, Rob calmly remarked.

"Awwww . . . shoot, the nurse jokingly responded, I was hoping to dig around a bit and try poking you a couple times before finding your vein."

The nurse then asked the two of them, Hey! Have you two met?

Rob answered, No, I don’t think so.

Well, Rob, said the nurse as she gently held out her hand, palm facing the man sitting next to Rob, this is Brian.

There they sat, side by side, in their recliners. The room was a cool enough escape from the Texas heat that no one would fault them for snuggling up in a blanket. The recliners were lined up against one wall, while the opposite wall had a number of flat screen television sets displayed for patient viewing during their infusions.

Brian was fully reclined with his feet propped up. When he first sat down, he had been careful to keep his infusion arm clear of the book that he had set down on his table. He had planned to read the book during his infusion, but the arrangement had allowed him to doze off while the drug flowed into his body.

Since he was just waking up, he had looked a bit groggy when Rob first sat down next to him. With the almost brash assistance of the nurse’s bold introduction, he found himself gradually coming out of his nap stupor. It was then that he heard Rob introduce himself.

Hello, Brian. I’m Robert, Robert Murphy, but you can call me Rob.

Brian was looking on with an almost sheepish grin, but any awkwardness to the meeting quickly dissolved as the conversation proceeded. Although they had never met before, throughout this somewhat clumsy meeting, there was a palatable aura of deep respect between them. Due to the silent understanding they shared, an outsider viewing the situation would have thought they were old friends that were pleased to reunite—that is, until they began to speak to one another.

Observers would also quickly figure out that they were not all that concerned about their looks. You could tell by the not quite matching clothing that each of them wore. If you were to guess, you would probably be correct to say that these two men sitting side by side in their recliners had each put on the first shirt they found at the top of their dresser drawer that morning.

Brian was in shorts and a tee shirt, and Rob wore blue jeans and a slightly wrinkled long sleeve button up shirt. Whatever the proper dress code was for an infusion center, neither Brian nor Rob seemed to care. Brian’s face showed some stubble that had not been shaved for the past few days and his hair was matted as though he had just climbed out of bed. That scruffy look seemed to fit right in to the atmosphere of the center.

Rob’s appearance was a little better than Brian, but not a whole lot. He was dressed only slightly nicer than Brian because his clothing was a bit more formal and his hair was neater. He had learned that a long sleeve shirt was inconvenient for accepting an IV, but he had also learned to appreciate the benefit of using the long sleeves to cover up any bandages that might remain on his arm when the infusion was complete. He found that when he left the infusion center to return to work, a long sleeve made the transition back to work all the more convenient.

Rob was not interested in people noticing a bandage on his arm after he left the center, and most definitely he did not want to enter the now monotonous conversation that he would always face when people would ask him why the bandages were there.

He would much rather talk about the game that the local university, University of Texas, was playing that night, or the game that one of his children had played in the night before. Verging on the risk of presenting himself as a ‘my child is better than yours’ overly-proud parent image, he relished the opportunity to brag about his children’s accomplishments. His suppressed pride made it particularly difficult for him to lead post-infusion conversations in the direction he wanted the conversations to go if he had to get around the curiosity that was generated by a visible bandage on his arm.

A similar delicate social struggle had become part of Rob’s world over the past few years when he had to struggle with the decision of whether to use a cane to help him keep his balance while walking. His wife said he should use it, but he looked at it as more of an inconvenience. It wasn’t until he had a conversation with one of his co-workers that he decided that he would carry a cane.

His co-worker was one of the only people outside of his family that knew of his health. Rob told his co-worker that his wife insisted he carry the cane to let people know that there was something going on with him. His co-worker, knowing about the way Rob was beginning to walk over the past few years, offered Rob a humorous insight. He said that rather than carry a cane, he could simply carry a brown bag with a bottle in it; then people would know that ‘something’ was going on.

That pushed Rob over the edge. He started using a cane.

After accepting the cane as a part of his usual wardrobe, a few years later, Rob’s wife gave him a walker as a Christmas gift. He found himself battling with some of the same issues that he had battled in regard to his decision to use a cane. He was not proud of advertising his illness to the world. He preferred to keep his poor health concealed. However, his pride had been crumbling, and he eventually accepted use of the walker with less of a fight.

He found that the redeeming factor for relinquishing his pride and accepting the walker was that he could still use the cane most of the time. He could use the walker when attending things such as an athletic event where he would need to walk a long way to the field, and then use the cane when he began searching for a place to sit in the stands to enjoy the game.

Rather than carry a bike lock for his walker, and partially as a result of the depression he was battling, he would depend on the goodwill of people in the area to keep his walker safe. Fortunately, the people of Central Texas were generally honest. Not only were most people honest, but many people would go out of their way to help him when they noticed him having trouble with something like walking up a flight of stairs.

Because of the goodwill that he had learned to expect from others in the area, he actually felt comfortable leaving his walker off to the side when he would reach the bleachers at a football or soccer game. Just to be careful, he would try to leave it where people would not likely see it, but if they did see it, he had confidence that they would not steal it.

The only people that he actually worried about causing any problems for him were the younger people. People that had not grown up enough to respect other people’s property. He decided that if someone did see his walker, the person most likely to cause problems for him was probably going to be a child or teenager. However, even if that were to happen, he felt like he could count on an adult to step in to ask questions and possibly stop any damage that might happen to his walker.

The grave uncertainties that MS had introduced into his life had probably also introduced an increase in his willingness to accept the simple uncertainties of something like leaving his walker where it might be damaged or stolen. Besides, these trite uncertainties that could cause inconvenient changes in his life were not worth putting forth major effort to guard against.

In particular, after getting past the initial struggles that he had faced when first diagnosed with MS, in an effort to find happiness in his life, he felt he had learned many things about how best to make choices to compensate for potentially unwanted life circumstances. After becoming a regular visitor to the infusion center, he felt that he was learning to find happiness with his own restructured life. He was even learning to set new life goals such as to help other people in their efforts to find happiness.

He was learning that everyone seems to face difficulties in life, and he was learning that quite often he could help others with their own difficulties. As successful as he was becoming at helping others, he wondered if he could always help others with their struggles.

Afternoon, Brian mumbled.

Looks like you’re familiar with this process, said Rob.

Unbeknownst to Rob, Brian had been struggling with MS for only a few years. He had taken the path of least resistance when dealing with the illness. Almost immediately following his diagnosis, he had left his job to rely on his wife and the government for help.

Brian had become approved for social security payments as soon as he could. After receiving the payments for a short while, he explored the idea of moving to live in a third world country while still collecting his social security payments at his US bank. Although those payments would leave him in near poverty if he were to live within the United States boundaries, the payments would make him a wealthy man in some countries outside the US.

If he were to follow his plan, the difficulty for him would be to find a way to continue receiving his preferred medical treatment in a sanitary fashion. If he lived in a poor country, not only would it be nearly impossible for him to find a doctor to give him his preferred treatment, he probably couldn’t find a place at all to receive his monthly treatment in a sterile environment.

He had no children to worry about, so he was not really tied to anyone but his wife, and she seemed to like the idea of an adventure of moving to another country. In addition, they had recently declared bankruptcy, so there was not a lot of reason to stay in the United States.

One thing certain about MS is that it not only affects the MS patient, but it affects the lives of people surrounding the MS patient. Brian and his wife were an interracial couple. As difficult as that difference had been on their marriage, MS and its accompanying baggage had caused much more dramatic difficulties in their marriage than either of them had expected—both financially and emotionally.

His wife wanted a change. She didn’t want a divorce, but she wanted things to be different than they were, and she was willing to do just about anything to get that change. Moving out of the country might quench that desire for change that had grown inside of her since Brian’s diagnosis, but that would be taking a huge risk with her and her husband’s lives.

It was then that Brian somewhat rhetorically asked, Are we both taking the same medicine? Do you have MS?

Yes, Rob replied, I have MS. I think we’re taking the same medicine. It’s Tysabri, right?

Yep, said Brian, he then asked, Didn’t Tysabri get withdrawn from the market a few years back?

Rob had to give Brian’s question some thought. Yes, after a few years of use, about 5 of the thousands of patients taking the drug worldwide had died. The FDA had removed it from the official government approved drug list. They wanted to do some more research to see if Tysabri was as safe as it could be.

It was then that the FDA determined that the patients who had died, had died due to the drug treatments that they were given in combination with Tysabri. In other words, doctors had figured out that they needed to be extra careful with the patients who would receive Tysabri. Doctors that would prescribe the monthly infusions learned to carefully monitor what other drugs a patent was concurrently taking while having the monthly infusions.

With confidence, Rob responded, Yeah. Tysabri was withdrawn, but they mostly figured out what was causing the problem. That’s why they re-approved it, and that’s why we can be sitting here taking it.

I’d just like to think I’m a brave soul, said Brian with a smirk, They can’t scare me away from taking a drug that’s supposed to at least slow down the progression of this stupid disease.

When he found how pleasant most of the people could be that he would meet at the infusion center, Rob